targs66

I have never heard of this, but am curious to see if others have found it helpful. I have the same problem with brain fog, even while I am sitting and have reasonable BP and HR! Thanks, and keep us posted, pls.!

Hi and welcome, I would second yogini's comment about considering Florinef's side effects. I know it is a very helpful medication for many people, but I felt very bad when I took it, even in very low doses. I was agitated, shaky and nervous almost to the point of tears, and my insomnia was much worse. My doctor was somewhat dismissive and said it "shouldn't " have those effects, but I tried taking it again and had the same reactions. Just thought this info might be useful for you! Of course his increased emotional problems may have nothing at all to do with the Florinef but it's just something else to consider. I wish you and your son the best and hope he's feeling better!

Hi again @JuliaMaple Yes, I do have low BP. My BP is very low in the AM (80/60) but improves through the day, generally up to about 105/65 at night. My heart rate tends to surge and dip. Coincidentally I just saw a doc the other day, and when I described this phenomenon - that I seem to suffer worse symptoms after anything that raises my BP or HR - he said that he never agreed with the "stimulant" approach because he felt that "you can't create energy from nothing," which I thought was a clear way of explaining things! Unfortunately, it doesn't help in our search for something to improve symptoms. I hope you are having better luck solving the medication puzzle! Keep us posted. all the best.

I've also had blood pressure and heart rate lowering effects from medications that were supposed to have the opposite effects, but that tends to occur for me after a brief time delay. I found that with both midodrine and Ritalin I have a brief surge of raised blood pressure, which is what I am aiming for, followed very quickly (within a few hours) of severely dipping BP and HR. It's almost as if my body uses up its scant energy reserves for the initial surge and then is so depleted that it can't sustain them. Of course, that is my own very unscientific theory and I am happy if someone debunks it with more solid information! I hope you can find a medication that works for you. Keep us posted.

Thanks, Amyschi. I agree - it is really helpful having all the knowledgeable people on this forum who have first-hand experience with these conditions to bounce ideas off. I'll take another look at your other thread on chronic dizziness. Good luck, and keep us posted!

hi again, with apologies for the late reply! I liked your question, Amyschi, about whether there's really a correlation between the dizziness and low blood pressure, because I've also wondered the same thing. I only wish I knew the answer! There are times where my blood pressure is "reasonable" at about 95/64 (which is not that low for me) and yet I feel at my absolute worst, which makes me think something else is going on. I sometimes wonder if it's just sudden, fleeting changes in either BP and/or HR that make me feel very weak and dizzy - so sudden that they may be hard to catch on a regular BP machine? I don't have POTS (was diagnosed with only having "borderline" POTS) but have been diagnosed with neurally mediated hypotension, so I don't get extreme tachycardia (I'm sorry that you do!). Maybe that's why midodrine and Ritalin aren't that useful for me - although they temporarily raise BP, they may not prevent the sudden changes that make one feel so dizzy. I'm speculating! Again, I hope this is all useful, even if it's just that you've found people who feel the same way as you! Keep us posted on how you're doing.

hi again Amyschi, I didn't respond too badly to midodrine; at least, not the usual exacerbation of dizziness that I get with, for example, B vitamins. I agree with what Yankee Belle said above - the "start low and go slow" mantra with meds works best for me! The only problems I've had with midodrine is that even with very, very small doses I feel better for maybe a few hours, which I'm sure is because of the increase in blood pressure, but then seem to "crash" afterwards with very low BP and heart rate. Taking more midodrine at that point doesn't help; it's as if my very scant energy reserves are used up quickly, and then nothing is going to work. I actually just tried Ritalin recently with very similar results - even at very small doses, I feel a bit energized at first, and then really crash. That's a very different response that I get to things to which I'm intolerant. Anything that has even a mild vaso-dilating effect makes me feel awful not long after I take it, and that includes things that should be helpful, like B vitamins and Co-Q10. I think another category of meds that I can't tolerate may be anti-cholinergics, which includes of all things, Tylenol! Oddly enough, aspirin doesn't seem to bother me at all, but Tylenol and diclofenac make me feel like I've been run over by a truck! Regular Benedryl (diphenhydramine) causes similar problems, but there's a "Benedryl Allergy Relief" sold in the UK that contains only acrivastine, which has less anti-cholinergic effects (if I understand correctly) than diphenhydramine. I wonder if that would be better for you in terms of not making you dizzy than taking regular Benedryl? I believe that all formulations of acrivastine sold in the US contain pseudoephedrine but I've never tried those. Apologies - I've just run on without providing you any solutions, but hopefully comparing symptoms/reactions is useful! best, Targs

Hi and welcome to the forum, I'm also completely intolerant of most medications, including vitamins and supplements. I'm not at all pill-phobic, but have found that even the most benign meds usually make me feel awful. Like you, I'm also very dizzy much of the time, but I don't have UC or other digestive issues. I find it so frustrating! I'll also look at the link Katybug posted. Hope you can find some answers! Targs

I'm sorry to hear of your problems. This is a great forum for information and support! I recently had a nerve conduction test. The docs were concerned about my apparent muscle weakness and pain. The test was normal - while I'm glad that they didn't find anything sinister, I am back to square one trying to figure out what's wrong. BTW, several people told me that the test was going to be quite uncomfortable but I found it completely bearable. At no time did I feel major discomfort. I hope it's the same for you! Good luck!

I'm sorry to hear of your various medical problems. While I can't specifically answer your question, I did want to mention the following: my understanding is that Dr. Pocinki is not taking new patients! I would have liked to see him myself as I have a family member who knew him years ago when they were both working at GW, and she recommended him highly. However, I don't know of anyone who has seen him as a dysautonomia patient. Good luck in deciding what approach to take, and keep us posted. Of course, if you find that I am wrong and Dr. Poco kid will take new patients, please let us know!

I've had a similar situation - numbness and tingling in my left foot, pain radiating up through my left leg and in my left arm, and a definite weakness in my left leg. I have a family history of MS, and felt certain that's what it must be. I've only had one brain MRI six years ago, but based on that they said it's not MS. (I'm currently in the UK and in my experience they do a lot less diagnostic testing than in the US.) I can be quite unsteady on my feet, though it varies with how bad I'm feeling on the day. It's good to hear others here weigh in on all the possible non-MS causes of those kinds of symptoms, although I really wish I knew what was causing this!

Thanks, Mike, and everyone else - your thoughts do help. I agree, I can logically think "what's the worse that will happen?" if, for example, I faint or fall. And I feel quite confident that someone out there will help me, and I realize it's not going to kill me. But I still end up in an endless feedback loop, usually at night when I can't sleep, worrying about things that don't merit any worry at all! It's why I think there must be something physical causing this feeling of minor panic over really minimal issues. Good thread!

Interesting - I find decision-making so difficult these days, especially if I am feeling rough. Really simple things, like what to wear. Packing a suitcase (not that I travel much) is ridiculously difficult: I can't seem to anticipate what I will need. I find this quite frightening. I'm sorry to hear others go through it, too.

I'm also curious to hear any physiological theories for this. I used to have the most unshakable personality in my 20s and 30s. More than one person described me as "fearless," which seemed odd at the time because I couldn't understand what there was to worry about. Now in my early 50s, I am a basket case of anxiety. When I'm feeling my worst (having a "dyssy fit" - great expression ), I feel like I'm on the verge of tears. I feel (and probably act) like a frightened child. Is this what they call "emotional lability?" I can only assume, given my past steadiness, that something physical is causing this unbearable anxiety other than the situations themselves. I've blamed it partly on my fear that my body just won't "work" when it should - that I'll either faint or fall down. But I'm curious to know if there's other explanations, like excess cortisol, or adrenaline, or something similar.

Hi Sarah, I'm like you- really sensitive to cold. I know it's unusual among most people here on the forum. Two summers ago, I spent some time in Maryland in July and braced myself for heat intolerance- but no, it just makes me feel much better. I also have what I think may be either allergies or mast cell issues, so I wonder if there's some connection? Enjoy the summer! Targs

Welcome to the forum! Thanks for your post. Dizziness seems to be the most debilitating symptom for many here on this forum, but it seems like there is a huge amount of variability in what triggers it and what resolves it. For example, many say that heat is a trigger for them, but I find the cold intolerable. It's also interesting that you are better in the morning and worse as the day goes on. I think most people here (myself included) are much worse in the morning, which does seem odd given that it seems that lying flat would correct the orthostatic hypotension. I hope you can get some answers from reading about others' experiences here on the forum. Please keep us posted on your progress.

Thanks for the answers! Complicated stuff - my neck hates all these pillows, but I can't sleep without them!

I guess my worst triggers are stress and fatigue. I have a real problem with anxiety, which of course makes me feel stressed, even when I can very logically look at a situation and say there is no reason at all to stress over it. I end up in a sort of feedback loop overthinking the most minor things! I've had two TTTs, several years apart. The first one didn't include an injection, and the results were "normal" even tho my starting BP was something like 79/48. During the second one I was "borderline" POTS but when they injected a synthetic adrenaline I crashed, and based on that they diagnosed the NMH. Yes, it's very frustrating when you are avoiding laughter b/c you know it's going to make you feel rotten!!!

Thanks so much for your post, Rosey. It's so encouraging to hear that people improve. I've thought about trying to do an elimination diet for ages and haven't gotten around to it b/c I just feel so overwhelmed by day to day life, even tho I do very little. You've given me more incentive to try it. Huge congrats on getting your life back!

I am finding that I need more pillows/elevation! It's quite uncomfortable for my neck but I absolutely can't sleep flat. I feel like I'm drowning. Worried I'm going to end up sleeping in a chair! Can anyone explain roughly why the elevation helps some people? It seems counter intuitive, given that I have low BP - you'd think that lying flat would help!

I have the same problem with conversations, even on the phone. It's so frustrating how rotten a phone call can make me feel, and I've had to tell a lot of well-meaning friends that a visit will wipe me out! I've been told I have CFS for years, but like many people am dissatisfied with that given how it makes me feel that I'm being "written off." I've never taken benzos for any length of time (just the occasional "crumb" of one if I'm feeling desperately anxious, and that probably twice a year), so I know it's not that. I've been told I have neurally mediated hypotension, and thought maybe that explained the problem I have with any sort of stimulation - a conversation, a laugh, a startle or fright, etc. I don't entirely understand it, but I think NMH includes a problem with adrenaline, which sets off a plummeting heartrate and BP. I know that's what happened with my TTT - I was reasonably okay with the tilting, but the minute they administered the norepinephrine (sp?) my BP and HR nosedived. I know that's not very clear and doesn't offer a solution, but it's a possible alternative explanation - ? At least you know you are not alone!

I have blurred vision at times. I always use the same computer when I first get up - a laptop that sits on the kitchen table. I find that some mornings I have some trouble reading text on it - despite the fact that I'm sitting at the same distance from it as I always do. I had an eye test within the last year and mentioned it, and they were not concerned. I'd love an explanation! Sorry I don't have any more info than that! You might want to consider having an eye exam. They can check the optic nerve to make sure there's no changes. Keep us posted!

I can relate - I'm probably not overweight but I really have to watch what I eat to avoid gaining weight (which I can do at the drop of a hat). If I gain a few pounds, I'm pretty diligent about eating less for as long as it takes to get rid of it -- and I'm always surprised at how bad I can feel when I'm eating less. I don't ever fast or go on extreme diets, and my diet is quite healthy, but just limiting quantities can make me shaky very quickly. I may start monitoring my blood sugar to see if I'm hypoglycemic. I'd be curious to know whether the Metformin makes a difference - keep us posted!

Dysautonomia seems to come in all sorts of lovely shapes and sizes! I have what's been called neurally mediated hypotension (I think, but am not certain, that it's the same thing as neurocardiogenic syncope). I tend to have low blood pressure, and any sort of exertion makes it go further down. My heart rate will increase a bit to try to compensate, but not nearly as high as a classic POTS patient's will. I have constant light headedness, wooziness and exhaustion. In addition, unlike many of the POTS people on this forum, I'm very heat tolerant but completely cold-intolerant. It seems that they are starting to categorize and understand different forms of dysautonomia. It can't come soon enough... Hope you can get your Mayo appointment soon. Keep us posted.

I tried LDN several years ago. Unfortunately, it made me far too spacey and dopey, even at very very low doses. I didn't have any other ill effects. One of my biggest problems in generally is extreme fatigue and brain fog, so I had to stop taking it. I found it absolutely impossible to focus on anything. It's a shame, because it did make me feel sort of relaxed and peaceful -- but I literally was having difficulty doing things like dialing a phone, so I had to stop. I hope it can help your son - keep us posted.