kmichaelson

Hi blitzk, That sounds very much like POTS to me and is very similar to my symptoms too. Has your neuro ever mentioned POTS to you, or do you know if he knows about it? Mine originally suspected MS and spent a lot of time doing tests for that as well. I know it's frustrating not to be able to figure out what's affecting you so much, so I'm sorry you're going through this! Good luck to you. By the way, you may have seen this already, but here's a list of POTS doctors in case you think you may need to see a different doctor: http://www.dinet.org/physicians.htm

I get a very similar feeling as well. Someone earlier in this thread described it as the feeling you get when you have a near car accident or something like that. For me, it's pretty brief, but a very strong feeling. I don't feel anxious, but it's just an unpleasant disorienting feeling. I also get the feeling at night that many people have described where sometimes my heart will just pound really hard and I'll get warm. again, I don't feel anxious, but I do feel like I have excess adrenaline at that time. I don't know if both of these sensations are from adrenaline, but I get them and they both make sense to me as feeling like a surge of adrenaline!

Hi Derekilz, I don't know if this is exactly what you'd be looking for, but I recently started mixing condensed cherry juice with water, and it tastes a bit like a less sugary sports drink. The main reason I do it though is because cherry juice has anti-inflammatory qualities (like COX-2 inhibitors) so I'm hoping it will help with joint pain and some inflammation issues I have from endometriosis too. I use Mount Morenci cherry juice, by the way, if you're looking for something with anti-inflammatory benefits. I figure drinking a little cherry juice won't hurt anything at least.

Hi Annaleise, I have this exact issue as well. It seems that my hands and feet are either like blocks of ice or they feel like they're on fire. My feet in particular really burn at night when I'm lying down, but typically are really cold. I'm relatively new to learning about all of this, so I don't know much about small fiber neuropathy, but I've wanted to learn a bit more about it because I also have a lot of issues with dexterity in my hands and wonder if that could be neuropathy or if it's just due to a lack of circulation. Sorry I'm no help, but I just wanted to respond since what you described is so similar to what I've experienced as well!

I just want to chime in too because I've had unexplained ear problems for quite some time too! I've only had really obvious PoTS symptoms for about 2 1/2 years, but I've had ear problems for more than 10 years. The most annoying thing is that it feels like there is water in my ears all the time!!! It's especially annoying when I'm lying on my side and I can feel it moving around, but the weird thing is that ENTs tell me there's nothing in my inner ear... One doctor thought maybe my nerves were affected from having sinus surgery a long time ago, but I wonder now if it's a PoTS issue, something to do with blood flow (or lack thereof) since so many people on this forum seem to have similar issues. I also have constant dizziness and some vertigo as a lot of people in this thread have mentioned too. I know dizziness is very common in PoTS, but it seems like actual vertigo is not usually explained by it. I get the weird vision and eye symptoms people in this thread have mentioned too. As much as I hate these symptoms and feel bad for anyone who has them, it's such a relief to know I'm not alone in having these weird, unexplained things!

Yes, I have this symptom as well, like you said, not just in my legs but my whole body. Some days it's hard to even hold my arms out enough to type on my laptop! I don't know what it's from--if it's that I'm not getting enough blood to my limbs or what, but it's up there with dizziness and fatigue as one of my most annoying symptoms.

My response is very similar to yours, Ginger. I've always been very active with exercise and sports to up until getting sick with this, and all of my cardio tests have been normal. However, I have a lots of neurological issues (numb, burning extremities, migraines, vertigo, Raynaud's, Sjorgens, the list goes on) that point to dysautonomia rather than cardio origins.

Thanks, everyone, it's good to know I'm not alone! Also, Katybug, thanks for letting me know about the other thread too. I can't wait to see what everyone else has to say too. I do feel really bad because I feel like I'm not being "myself" but hopefully if I'm aware of it, I can change it a bit. I just feel like my emotions are controlling me sometimes lately.

Yeah, mine is usually around 70/40 when I first wake up (when I feel the most awful), but it goes up a bit gradually the longer I'm awake. I just got a blood pressure cuff, so I'm using it way too much! Ha ha.

I know exactly what you're saying! All this holiday activity used to be so much fun, but now I just feel like it's such a challenge! I love seeing my family and getting together with people, giving gifts, and all of that, but it just uses so much energy that I don't have! I hope we all get a little extra energy from Santa this year to make it through the holidays and let us enjoy them.

This has happened to me too. I get that really sick awful pre-syncope feeling. Usually it goes away after a minute or two and I go right back to sleep. I know blood pressure normally lowers when people sleep, so maybe for those of us with POTS and/or normally low blood pressure it's more extreme.

I have really severe cramping there too sometimes. I think mine is more likely my stomach and esophagus, but it's very painful and feels like how people describe ulcer pain, but there's no ulcer there. Unfortunately it flares up when I take anti-inflammatories too...I don't suppose you've taken anything like that lately? Whatever is causing it, I hope you feel better!

Hi everyone, first of all, I promise to hold my irritability in check while we interact here. But honestly, I have become so irritable in the past 6 months that it's really weird. I've always been a very easy-going person and I never really got mad, even sometimes when I probably should have gotten mad about a situation. Now, EVERYTHING seems to piss me off, especially family and their ignorant comments about what I should or shouldn't do. But just everyday situations really get to me like they never ever used to. Have others had any personality change like this with their illness? I've also started taking midodrine within the last couple of weeks, and I know that stimulates the fight/flight response--maybe I'm constantly just in fight mode right now, LOL.

I'm so glad that helped you, lieze! That's wonderful to hear! Shopping has been incredibly difficult (some days impossible) for me the past year and I wonder if that would help. It's just so hard to get through a store when I feel like I'm going to fall over and crash into people or a big shelf of stuff! It's hard for me to get past hang-ups about what I "need" now, especially since others can't tell why I need assistance, but I'm so glad you did this and were able to feel functional again--that's a great feeling!

Hi Atomic, I sympathize with you so much! You've gone through so much emotionally and physically that it's natural to feel like you need time to recover. I feel like I've seen every horrible doctor in the world in the past three years and that definitely discourages me from trying new appointments. Also, I can't believe your therapist told you you have a fear of standing!!!! Ugh, the ignorance of some people who are supposed to be professionals is amazing. Like someone else said, the tilt table test, while not the most pleasant thing I've ever done, was well worth it for me because it finally offered some sort of 'proof' of what was going on with my body (and showed that it's not just 'anxiety' as doctors who don't know the answer love to say).

I've noticed that my hands are shaky and have a tremor too since this all started. I had nerve tests about 6 months ago due to this symptom and numbness/tingling in my hands, but the results were kind of inconclusive: I had some "slow" nerves but not indicators of an exact disease. I also have trouble with fine motor skills now too, like picking up small things and my writing has gotten a lot worse too. It's a relief to see rama say that about our sympathetic nervous system being the cause of the tremors at least. I've never known the reason for it and sometimes not knowing makes me imagine the worst.

I just submitted my letter of resignation for my full-time job today. I've been struggling for about a year to hang on to my job (with FMLA, adjusted schedule, etc.), but once my FMLA ran out, I haven't been able to go back full-time. I've been feeling like a lot of people in this thread described, like I'm giving up by quitting my job. I come from a family of workaholics who define themselves by their jobs, so I think I've had an extra hard time coming to terms with giving up my work--it feels like I'm giving up a huge chunk of my life and my self-worth. Also, I really liked my job and love the people I worked with, but at this time I am barely able to do a few hours of work a day, let alone 9 hours a day, 5 days a week. I feel incredibly sad right now about having quit, but I also think it will be a relief once I get past the sadness because it's been a great deal of stress trying to do what I've needed to get done at work and feeling like I'm letting people down by not being there. Hopefully I'm leaving on good enough terms that if I recover one day enough, I could go back to work in this field somehow (at least I hope), so I'm trying to look at this as what I need to do NOW rather than the end of my life, which is what it sometimes feels like! (sad laugh) I'm also hopeful that I can do a bit of work from home--not nearly the same hours or pay, but at least it's something. I suppose I should also look at applying for disability, but I really know so little about it I don't even know where to begin. At least I know there are some resources on this site I can look at.

Hi J Can you elaborate? I was thinking that was the qualifying test. I wish I could elaborate more, because at the time I was told this, I didn't know enough about POTS to ask a lot of questions. This was also during my tilt table test, so I was also on the verge of passing out during the conversation. What I recall is that I asked if the test was just looking to see if my pulse went up 30 bpm because that's what I'd thought the definition of POTS was, but the nurse administering the test said that's not necessarily the case. She told me that everyone's heart rate goes up upon standing, so they're looking for other indicators as well. Of course, now that I've been diagnosed (my heart rate went up, then bp went up, then dropped waaaay down during the test to 40/20) and read more extensively about POTS, the 30 bpm criteria is what I always see. It's true most people have a raise in heart rate upon standing, but not to that extent. I guess at the time I just deferred to what I expected was her expertise in the area. I recall someone else posting here that a doctor told her the same thing--her pulse went up 30 bpm but her doctor would not make the diagnosis of POTS. Sorry if my post was confusing or misleading--I'm not at all saying that something is or is not POTS, but just trying to say that not all medical professionals seem to agree upon the criteria for a diagnosis.

Wow, that's interesting that you posted this because I was going to ask the same question! I've always kind of had dark circles, but they get ridiculous when I'm feeling really bad. It looks like I have two black eyes sometimes! I wonder if this has to do with blood flow at all or if it's just a product of how tired I get?

It's funny you say that about your sister, Peregrine, because I have a sister with those symptoms, mono, and CFS as well, and I'm always seeing POTS symptoms in her as well, but she doesn't think she has it either. Maybe I just have POTS on the brain.

Hi everyone, Sorry if this is something that's been discussed, but I couldn't find it in any past threads. I've recently started midodrine and noticed that my systolic blood pressure has risen from the low range (used to be 80-90 and is now 90-120), but my diastolic blood pressure is still pretty low (anywhere from 40s-60s). I know that diastolic bp is the pressure when your heart is not beating, but what does that mean as far as POTS and symptoms go? I have to say, I've felt different, but not exactly better on midodrine so far--it's almost like I have more nervous energy sometimes, but I still have the weakness, shakiness, dizziness, and overall fatigue/crappiness as usual! Also, I've seen posts about many people have LOW pulse pressure, but it would seem that mine is really pretty high since my diastolic is so low but my systolic is pretty normal. I guess I would be averaging a pulse pressure of about 60 now where it used to be more like 30. I guess I'm just trying to figure out what this change might indicate and if it's a sign that midodrine is helping or not. Does anyone else have this kind of bp reading, or could anyone tell me what it might indicate is going on? Thanks in advance!

Hi and welcome to the forum! Your symptoms sound very much like POTS and like what I experience with the dizziness, weakness, shakiness, etc. Also, your pulse going from 50-60s to over a hundred when you go from sitting to standing sounds almost like the definition of POTS (a raise in heart rate of more than 30 within 10 minutes of standing). To qualify that though, I had a nurse who does Tilt Table testing tell me that they don't necessarily consider the raise in 30 bpm to mean someone definitely has POTS, but to me it sounds like your symptoms are very similar to many of us here! Have you seen the physician list on this site: http://www.dinet.org/physicians.htm Like you said, perhaps the doctor you're seeing just isn't very familiar with the disease. Having a good, educated doctor is invaluable in helping to figure this out! Good luck to you and I hope you find the answers you need!

Thank you for posting this, Shiner Kitty (cute name, btw!). I've wondered how much overlap there is between dysautonomia and chronic fatigue, particulary if a lot of people who are categorized as CFS actually suffer from POTS or some type of dysautonomia. I know I was there for a long time, and even though POTS is a huge pain, I'd rather have that diagnosis than CFS since I know a bit more about what's happening with my body and how I might treat it. One thing that I still get that seems more like CFS than POTS is a sore throat almost every day. I wonder if others on this forum get this? I also have recurrent mono, so it may just be related to that. EDIT: I just saw this sentence in the article, "...diminished blood flow to the head and neck may contribute to sore throat by affecting blood flow to neck muscles..." Interesting! Still I'm curious if others have this?

I'm similar in that I feel very guilty about my husband having to do so much more now that I'm sick. He's wonderful and doesn't complain, but obviously it adds to his stress. I think that's a big fear of mine if we were to have kids that I wouldn't be able to do as much as I'd like and it would just add even more to his stress.

Oh my gosh, that's exactly what I get! It's so frustrating because they hit when I just want to sleep, but I feel like I just drank 100 cups of coffee. Why can't I get a little of that adrenaline in the morning instead?!