Tammy

I'm so the opposite! I can't handle much light and seriously need it to be low light/dim in our home. The light makes me disorientated/faint like and my eyes almost burn from light. I feel like a vampire in that way At night when we watch a movie, I need it dark or else it's too much sensory overload between the sound from the TV and the lights on, it's just too draining. This will be interesting to see how different we each are in this sensory area. - Tammy

I'm not sure about heart attack, but I am told it is possible to have a fatal arrythmia with very low bp or slow heart rate or high bp or fast heart rate. I also knew a guy who had a bp of 150/80 while he was having a massive heart attack, so it's obviously possible. This is probably a question for Doctorquest. - Tammy

I've never put how the weather is in relation to how I'm feeling. Is there a correlation? I'm willing to be a part of your "science project" if I fall into your research criteria. I'm in MN. My ANS is messed up but I don't have official diagnosis for this. They always tell me my orthostatics are causing problems - the last time I was in the ER we had a huge snow storm but I never put the fact that it was snowing into the equation. This could be interesting - Tammy

Okay, so now that the weather is starting to get cooler, I'm back to trying to keep warm rather than trying to keep cool. Any suggestions on what to do if you are out and about and you can't warm up but you can't get home to sit in front of the heater or wrap up in an electric blanket? I went to the store with my husband for a little out and just from walking from the car into the store, I was freezing and felt very yuck-o! We had to get a few things so it took about 5-10 minutes which is a very long time for me to be upright/walking, so along with being cold I was pushing pretty hard my limits. So anyway, we get back in the van and I'm still frozen, to the point where my hands are slightly tinted blue and I can't feelt my bottom half of my legs or feet. It's only 57 degrees, so I feel like I shouldn't be getting this cold already. I have a seat warmer that we need to put back into the van so that sometimes helps, but I miss my body knowing how to keep itself temperature regulated! I feel like such a wimp! - Tammy

I agree with Rhonda, and electrophysicologist seems to have more understanding in our area than the neurologist do, unless you go to the Mayo. I have seen Dr. Bendit also, as he worked with Dr. Sakaguchi also for 1 day a week in my local area. Dr. Bendit definitely likes to study each case and puts you through lots of tests. However he was the first doctor I ever saw many years ago and due to how young I was he immediately figured I was on street drugs as to why my body was having so many problems - I was so upset that he'd even suggest that - so for us it didn't exactly start off on the right foot. Dr. Sakaguchi was okay with just looking through the tests I had already done and going from there, so it really depends on what you are looking for in a doctor. I think you usually need a referral for speciality through your regular physician, but not always, I think it depends on your insurance also. Hope you find someone who will meet the needs you have and be able to help

The only doctor I dealt with that would be available at the U of Minnesota that I saw for POTs and he was wonderful and I truly miss him as he had been working 1 day in my area through the U of M in the Cardiology department/heart center, was Dr. Scott Sackaguchi (not sure of sp?), and he is an electrophysciologist. Since I have a lot of issues with pulse/heart rate/function, this was the best option for me. Even though we couldn't find the perfect med for me, he tried so hard to help and would truly listen to all my crazy symptoms and didn't feel I was crazy I'd definitely recommend to give him a try. He's probably listed under Cardiology or an Electrophysologist specialist. I know you were looking for a neuro, but haven't found one that has been much of any help, and I saw Dr. Larson in St. Cloud and he is world-wide known as brilliant Neurologist- seriously - the guy is like 65 and apparently helped write some sort of Neurology manual with some guy that wrote everything there is to know about the nervous system, but he basically told me that what is wrong with me had been formed while I was being developed, like sort of a defect and other than accepting the condition as it is, and explained in detail why my nervous system react as it does (he spent about two hours telling me the medical aspect of the condition -- I was so exhausted and weak after the appointment from having to sit there so long )-- but he didn't have anything more to offer as to how to help me feel healthier. I think had there been something he could have done or suggested, he would have, but there just isn't a cure all at this point in time. - Tammy

You will want to check with your insurance and if they do cover them, you'll have to get a prescription for them from your doctor. Make sure he/she writes the compression level 20/30 or 30/40 on the slip and if it's to be thigh high or above the waist or the pharamcy won't know which ones you need. My insurance pays for all but 20.00 of the amount, and the amount billed for each pair is 130.00!!! That's just crazy for a pair of pantyhose, but if I didn't have insurance, I would probably have to surf ebay and find some there! It's amazing what a person can find at that site sometimes Tammy

I use ginger, the actual spice like one uses for cooking. I put about a 1/4 of a tsp in hot water, along with a ginger/lemon tea packet. It seems to help a lot but takes about 45 minutes to feel better.

More often than not, my pulse pressure is very narrow, such as 99/80 and the like. What causes this and also, is there anything a person can do to prevent it? I typically feel extremely weak when it does this. Thanks for any information

Lina, I have been struggling with that exact thought recently. I keep telling myself that I know it's real and all the crazy symptoms, but sometimes I'm afraid that if I talk about what I'm physically feeling, it sounds almost as if I'm a hypocondriac! Very frustrating to say the least and I've come to the conclusion that even though which symptoms are going to be more prevailant one day and then some others more so on a different day change, it's still comes down to something with my body is just really messed up! I'll get these spells where I'm positive that if I take my blood pressure and hr, it will show what's up, but many times it can be my normal low bp/hr as when I'm having an okay hour during the day... makes no sense at all, but it just is what it is. If only our bodies came with sensor codes that when malfunctioning would spit out data that would pinpoint the problem and also the solution to the problem. I sometimes wonder how when I get a cut or scratch, my body knows how to heal the sore spot with a little time, but yet I don't understand why it can't figure out how to fix itself with POTS.

Yes, I also get somewhat short of breath, not like I can't breath, just like I can't get enough oxygen or something, again - hard for me to explain exactly - Tammy

Even when sitting down, if I talk a bit... more than just one worded sentences, I get lightheaded/spacey feeling. Any body else get this feeling? It's really kind of strange since I'm not exerting myself, just talking! - Tammy

Interesting topic, thanks for starting the thread. I've only been to a neurologist once, but his take on it, is that while we are each being developed in our mother's womb, getting or having dysautonmia is already part of our dna. He asked me if my mother's was under stress during her pregnancy with me as that can affect a baby's nervous system development, etc. He had lots of thoughts on this and it was very interesting to listen to his points of view.

Sometimes when I go outside, I get almost disorientated/kind of dizzy... at other time the sun/light gives me a painful sensation - kind of like a migraine feeling. Anyone else have this? I don't really understand why it happens either? Thanks for any info - Tammy

Welcome to the forum! It's so exciting meeting new people and all these new ideas. When you mentioned Hyperemesis Gravidarum, I found it interesting as I had this with the child I miscarried before I had POTS. I never put the connection together, but could be one. However, my sister who does not have POTS or any type of dysautonomia, all of her 8 children she had severe Hyperemesis Gravidarum. It seemed to be worse for her when she was pregnant with girls but it was pretty bad with the boys too from my view. She's still thinking of having more kids and I have no idea how she continues to tolerate being that sick for all those months at a time. I know she loves kids so I guess she must rationalize it in knowing that the outcome outweighs the many months of pure nightmare! - Tammy

Oh Ernie, I am so with you. I have thought that myself, as to why I got dealt into a family with numerous health issues and then I look around and see all these healthy families just enjoying life and completely unphased. The only comfort I find is that even though my family is unwell, we are a very close knit family and stick by each other in all the downs in life and hope this is the case with yours. If so, that is such a blessing and all. Take care, Tammy

I know doctors are just people like you and me, but we are just so very sick and just hope to be better someday that it's so hard when they choose not to follow specialist advise or just plain give up on us. My doctor recently stated that even though I've been tested for everything under the sun and have tried many different medications, he doesn't want to give up on me just yet. Completely freaked me out... because my thought to myself was "Okay, so I really am hopeless case" and without hope, what is there? Oh well, I'm feeling too icky to even worry about any of this right now. Take care everyone, Tammy

Hi everybody, thanks for all the replies, and just knowing I'm not the only one who has the same difficulty helps me feel better! This is the best support site ever!! Take care, Tammy

Okay, so on a rare occasion, as in there's no one else to do it and the carpet in our livingroom is starting to have another layer of fuzz (due to our fluffy American Eskimo dog), I try to vacuum it myself. Well it's only a 12x14 area and every single time I do try to do this, I'm left feeling horrible... I get extremely weak and nauseous about 5 minutes into it and end up having to stop and lay down. I've been laying down now for about 15 minutes and am still feeling so yucky. Anyone have an idea as to why this happens? It also happens when I try to scrub something, like a big cooking pan or bending forward in the tub to clean it. Since being sick, my house cleaning ability is basically none existant and I feel so helpless... so I just live with it not quite as clean as it use to be, but it still frustrates me to no end ! - Tammy

Okay, this makes so much sense! The weird thing is that one of my friends had problems with fibromylagia for many year and then last year she got the influenza A that was going around and her doctor put her on an Anti-viral for 3 weeks. She has been so much better since than and I wonder if somehow the antiviral drug actually "cured" her fibromylgia? Interesting!

Oh my, I've never put being a worrier as part of the equation, but wondering if that can actually be a possibility. I feel too sick to worry much at this point, but looking back, my childhood I was a big time worrier. I remember worrying about my mom all the time as she was sick alot and also as I was a young adult I'd worry about driving in the snow/bad weather and also summer storms - to the point that I'd get very anxious about it. Wow, If I've made my self sick, even though it was triggered by physical stressor/trauma, that is just very unfortunate and very frustrating to think of.

Mine usually starts with a sudden lightheaded/dizzy feeling, with pressure in my face and than my stomach quivers , my heart starts racing, sweat like crazy and I need to hit the bathroom immediately. My legs get very shaky/weak and then the chills hit. I haven't figured out exactly what to do yet either in how to prevent these, but beta blocker seems to help some and also an anti-anxiety seems to be helpful during those. When you mention that it goes from your legs into your feet, it's funny how you say that because my husband kind of had that happen when he got the flu and right before he threw-up, he said something about this sensation he got that went from his legs down into his ankles immediately before , so apparently adrenaline can present it self that way even in healthy individuals - except we deal with it very frequently rather than just once a year with a stomach flu. Take care, Tammy

Just wanted to re-echo Dari,s advice about stopping Effexor once you have started it . Make sure to TAPER, and do so extremely gradually. Please read www.paxilprogress.org (or .com - can't remember) for information about effexor and how to taper once you have started, if you need to discontinue at some time. I didn't taper off of Prozac and went through complete **** for many months and still continue to have some effects. AGAIN, this is not to scare you but to prevent someone else from going through what I did with an SSRI. MY regular physician has also suggested I try Effexor, but since the Prozac difficulties, I have been way to scared to try any SSRI again. Also, you may want to read www.medhelp.org/posts/show/5332, as it covers dysautonmia and taking SSRI's a little bit also. - Tammy

We bought a mini van specially because of my health issues, and it's an older chevy venture. The seats are removable and a air mattress/camping mattress fits in the back area to lay down in while driving if need be. Of course, things seem to be a little more bumpy when laying completely flat while the van is moving but maybe I'm just really sensative to the motion and all. - Tammy

Yes, I think that's normal for us. I'm pretty laid back, but just a few weeks ago, my husband and I had an all out fight, the one where you say many things you don't mean, etc. and almost instantly, like a minute or two into our disagreement, I felt horribly sick, weak, and my heart rate went crazy... I was so mad at my husband I didn't want to tell him that I was feeling horrible, so I just went into our room and thought I was going to die! Scared the poo out of me but I knew it was just my symptoms flaring, so kept telling myself I'd be okay, I just had to calm down. Yes, it seems our illness can control our emotions at times. Tammy