bjt22

I've noticed that for a short while before I get really big setbacks in symptoms of any type, I'll have had at least a few days, or possibly a few weeks, of feeling better overall than I've felt for awhile. I've never known what to make of that although I tend to think when I'm feeling halfway human I tend to try to act like a normal human being and the setback comes from that. This includes all the migraine and cluster headache episodes and symptoms. Migraine was my first extremely noticeable symptom along with cluster headache episodes. Ofcourse, I had had other symptoms of POTS/NCS/autonomic dysfunction my entire life, I just didn't realize it. I thought everyone had dizzy spells, "grey outs" and black outs on a regular basis. After all, my dad and grandmother did! Almost all of my kids experience migraine. One of my daughters is very frightened right now as her migraines seem to be coming more and more often. She gets very classical aura preceding them. She's about the same age I was when I first started getting them.

oh, and my hands and feet? I tend to have the warm, dry hands and feet of a patient with autonomic failure. I pool constantly, so if they are hanging down to the least degree, they are purple and blotchy and will swell. My veins always bulge if I'm not laying completely flat. For me, this is very easy to observe as I have very fair skin that barely covers my vasculature. It's just right out there. I have features of a "hyperadrenergic" state...however, that has never fit me as overall, my symptoms are much more in line with a true dysautonomic state. I do think that I have part of my vascular system that does over-react to certain stimulation. I can't use some stimulants, and never have been able to. Maybe more information than anyone wanted to know, but back in my wild and mis-spent youth, "speed" was a very common recreational drug. Many people loved using amphetimines. I tried them once, maybe twice. Could not tolerate them at all. Made me sick all over feeling. Likewise, I could never use many cold medicines that contained ephedrine. To be honest, though, I'm not sure if I was bothered by these drugs in my system, or if I was reacting to their leaving my system. It's been a very, very long time.... Clonidine in the form of Catapres does work for me...but this is thought to do so because it does not "crash" the blood pressure in people with autonomic dysfunction. In fact, when I first started using it, my baseline blood pressure actually increased somewhat. I needed a beta blocker as well in order to keep my blood pressure down and to even begin to lower my heart rate.

Caffeine is my friend. When I first became extremely symptomatic, years and years ago, and was passing out several times a day as well as having constant episodes of extreme tachycardia, I decided, before I even went to the doctor, that I was going to try to live in a more "healthy" fashion...so, I cut out caffeine. Looking back, at that point, I went from very bad to the absolute worst. Very quickly. I don't use huge quantities of caffeine, but I do keep a glass of diet coke with me all the time...I sip throughout the day. I can see that some uses of caffeine could be problematic. For example, if one were to have two or more very strong cups of coffee in the morning and then no more...when the caffeine left the system there would be a huge crash.

I always thought Pink Floyd's "Comfortably Numb" summed it up quite well...

I have problems with "hot" and "cold". Sometimes one or the other will make me feel better, but often both cause trouble. I've even been known to have a cool cloth on my head with a warm one on my chest...or the other way around. Crazy.

Weather related? God, yes. In fact, it's something of a joke around my house. Frequently, I'll wake up in the morning, and based on which particular symptoms I'm having, with the ability to predict the weather for the day. I can sense a storm or other big weather change hours before it's apparent. Sometimes even the day before. All about barometric pressure. Humidity is a big deal, too. The more humid the weather, the worse I am. Ofcourse, I don't like really bright, bright, sunny days, either. In fact, there's maybe three days out of the year that the weather suits me!

I had the migraines before a lot of the other stuff set in, too. However, I've come to view that as just the first manifestation. According to this study, http://neurology.org/cgi/content/abstract/58/3/422 , and others like it, migraine is a temporary state of autonomic dysfunction. Some of us just seem to have evolved into more permanent, ongoing states. What does all of this mean? We don't know. Such a mixture of breakdowns has probably led each and everyone of us to where we're at today. Anything that alters blood flow can cause us to have syncope/near syncope. And what, after all, is a migraine? Whatever the mechanism, in the end, they are brought about by a constricting of blood vessels in the head (aura) and then the dilation swelling that occurs as the response (headache). Throwing out all of the terminology and speculation as to causes, it's not surprising that we tend to have migraine...after all, our vasculature not behaving properly is the cause of most of our symptoms. Not surprising that we, of all people, could feel faint as such occurrences.

Miagraine is an autonomic dysfunction. I don't separate my migraines or cluster headaches from my overall condition. It's all part and parcel. I get what could be viewed as "aura" almost every day. Since being on all of my meds, they rarely develop into full blown headaches. I have so much pre-syncope on a daily basis that I usually just consider such auras as a part of it.

Isn't it amazing when it all comes together? My story is a bit of a backwards version of yours. I have had symptoms for as long as I can remember, but I was the one who made nothing of them, while I felt like medical professionals were hounding me for being "different". I used to get really tired of hearing how if my heart kept beating at twice the normal rate it would only last half as long as it should, or that there was something really "not right" about my cardiovascular system. Also always heard the "did you have rheumatic fever as a child" question on a majority of visits. This all made me tune out, and I didn't seek a diagnosis until I literally couldn't get out of bed.

Yes...I've found that "balance" to be incredibly important. Sometimes, such as after a holiday, when I know that my diet has really gotten out of whack and I'm suffering for it, I resort to frozen meals such as the "Healthy Choice" brands for a few days. These meals are balanced out quite well as well as being proportioned appropriately. If you live near a large supermarket chain, some brand or other of these frozen meals are always on sale.

I totally understand, and I don't even live in Florida! In fact, I don't think I could tolerate it. Even here in the north, I'm very challenged when it comes to going out during the day when it's hot. I've been quite happy the past week because we've had several days in which it seems to be in the 70's or so....and I can tolerate sitting outside, in the shade, in those temperatures. Won't last long, though..."real summer" is coming. Ugh. A couple of years ago, our central air broke down. As always, this ONLY happens during a heat wave, right? It took us about a week to get a new unit, and I swear to God, I thought I was going to die. After about a day, I was almost completely bedridden. After a couple of days, I was needing oxygen. And ofcourse, the day after we got the new unit installed, the heat wave broke. It's very difficult with kids, though. I can't drive and chauffer mine around any longer. Only the two youngest can't drive, and now, my strategy is to always have at least one kid at home who can do so. This works for awhile, while they are still very excited about driving. I've dealt with this for a long time, so my kids do understand, but the problem is that its been a long time, so they just accept this as "normal". "Normal" as in "ofcourse you feel bad"....hard to explain when "bad" is "worse", and frankly, I tire of trying. My fourteen year old had to cook dinner last night. My husband will do so tonight.

My doctors actually encourage me to do this. They'll often start with baseline instructions such as "start out at this-or-that dosage" with the provision that I move it up to a point where it's helpful yet tolerable. I did this with mestinon and lasix. To a lesser extent, I did it with a beta blocker. I tried it years ago with Wellbutrin, but could never move it up enough and after a couple of years came off a very low dose that was doing absolutely NOTHING for me.

I am insulin resistant/borderline diabetic. I have been for more than 20 years. I do follow a pretty strict diet. I rarely eat sugar, try to go low on the carbs, and yup...watch calories and keep my weight down as best I can. What kind of medicine for diabetes do you take? See, diabetes is my big fear, as I'm very afraid of the drugs to control it. My blood sugars are very erratic and can drop for any and all every conceivable reason. They most certainly drop if my blood pressure decides to fall a little more than usual when I've been upright. All that said, our autonomic neuropathy IS pretty much the same as is that experienced by diabetics. Ours is just "idiopathic"...we don't know what caused it! A couple of years ago, though, I read a couple of really interesting articles out of Europe. They had determined that many people actually had the onset of neuropathy by the time they received a diabetes diagnosis, suggesting that the autonomic problems either happen very early in the course of the disease or might even precede it. This goes against all the commonly held wisdom about the situation. How to control the icky sweaty feeling after eating? You wanna know what's crazy? I don't sweat, but I can eat and FEEL as if my neck and face is sweating. No sweat there, but the sensation is just the same. Some foods do make it worse....spicy foods definitely do, as do high carb foods. And, like many other of our symptoms, it comes and goes. Sometimes its a lot more severe than others, and it seems to worsen as the weather gets warmer.

what you talk about sounds like "gustatory sweating". It is, surprise, surprise, and autonomic dysfunction. Here's an article, although it talks about it in terms of diabetics...however, remember that we have autonomic difficulties that are very, very similar to those experienced by people who have diabetes. We just don't have the diabetes to blame for our dysautonomia! http://www.medscape.com/viewarticle/431617

No OCD here....I can't remember well enough to be obsessive. I can't multi-task any longer, though. My ability to do that is totally gone. Even the way I read is very different now. I frequently have to re-read a page a couple of times over before going on to the next. I have a definite lack of focus. I've often joked that I now know what children with attention deficit disorder must feel like.

Here's a quote from a medical site describing limb hair loss as a symptom of neuropathy: "Autonomic neuropathy Cardiovascular symptoms: exercise intolerance, fatigue, sustained heart rate, syncope, dizziness, lightheadedness, balance problems Gastrointestinal symptoms: dysphagia, bloating, nausea and vomiting, diarrhea, constipation, loss of bowel control Genitourinary symptoms: loss of bladder control, urinary tract infection, urinary frequency or dribbling, erectile dysfunction, loss of libido, dyspareunia, vaginal dryness, anorgasmia Sudomotor (sweat glands) symptoms: pruritus, dry skin, LIMB HAIR LOSS, calluses, reddened areas Endocrine symptoms: hypoglycemic unawareness Other symptoms: difficulty driving at night, depression, anxiety, sleep disorders, cognitive changes" I emphasized the "hair loss" bit.... The article can be found at: http://www.aafp.org/afp/20050601/2123.html It talks about diabetic neuropathy, but in reality, the autonomic neuropathy that we are dealing with is often quite similar....we just don't always have the diabetes to blame it on!

I have practically no hair left on my legs. Seriously, I have about six or eight hairs that randomly grow in. I've also lost most all of my other body hair, if you get my drift. I've been told that this is due to neuropathy. That said, hair on the legs (and elsewhere) CAN be rubbed off, though....my husband used to have hair worn off during the winter from wearing long tube socks. A circle right around his calves where the top of the socks were.

Can I just say how lucky you've been to have people helping you? I don't mean to guilt you...but I went through a period of time like you went through, and my husband and I had NO help. None. I was in bed for several months without so much as a visit from my own parents or inlaws. In fact, my mother would call and moan about my not being able to visit her! I had a houseful of little kids, including a newborn, so my oldest, then 11 years old, had to fill in while my husband worked. I cared for my newborn in my bed for several months. Ofcourse, I must also state that I would have never, ever have been able to have dealt with all of my extended family in my house with me for long period of time. I love them all, but it would have driven me even crazier. All that said, I have dealt with a husband who can be "hovering". This has been going on for 14 years now, so he's much better about it...but there were a lot of times when he thought he should tell me when I should or shouldn't do something. In fact, there were instances in which he would go behind my back in this way. He meant well. He just didn't want to see me get hurt or get sicker again. We finally had a blowout over this....I tried to explain that while he meant to help, it really wasn't helping me. I was an adult and I intended to make my own decisions. Ofcourse, his feelings were hurt, and I honestly don't know if he ever totally understood where I was coming from, but he did quit doing a lot of the things that were very annoying to me.

Actually, yes, I have. I now have little fear or apprehension regarding the future...be it good or bad. Ofcourse, I'd like the "good", but you know, I've gotten through "bad" plenty of times, and if I have to, I'll do it again. My confidence in handling the "bad" is quite high. I also have worked through all those tricky questions and feelings about my own mortality. I truly do live for the day...and I want to continue to do that as long as I'm enjoying it. And I can enjoy it even when it might seem pretty bleak to others. After all, none of us knows what's going to happen in the future...those who believe they can overly influence it are kidding themselves. So, yeah, I feel superior, too! I also have to say that in many ways, it's made me a better mother. Don't get me wrong, I still have plenty of "mommy guilt" over all the things I've been unable to do for and with my kids...but, because I can't do much, we've spent SO much time just hanging out and talking. So, we're incredibly close. I also think my kids benefited by going through this with me. They have grown to be incredibly empathetic people who are almost always capable of offering understanding to just about any difficult situation anyone might find themselves in. They're also quite independent in many ways.

Could it be that you haven't really accepted and/or explored you POTS diagnosis? I willingly admit that there have been times, throughout the years, when I've latched onto the possibility of an irregular heartbeat or other factor being the cause of my illness. Why? Various reasons, I suppose. Some of these other problems could actually be FIXED. Who wouldn't prefer that to a prognosis of just-get-by-the-best-you-can? Some of these other problems are also better understood by the medical community as well as the lay community we must live in. It would make my life so much easier if I could tell people I had a condition that at least was half-way understood by the general public. If you are truly concerned about these episodes, talk to your doctor(s) about monitoring...either holter monitoring or through devices like the "REVEAL" implantable monitor. Maybe they will point to some specific irregularity. I caution you, however, in regards to expecting the correction of any minor irregularities to "fix" you...how would you feel if those minor blips during the day went away and you still felt rotten? Again, I suppose I'm talking about accepting the entirety of your POTS diagnosis. I know how difficult it is at times, but we really haven't much choice.

Well, for what it's worth, I can tell you that for years, I've felt such "pauses" and other irregular feelings. They usually happen at least a few times a day. I'm on beta blockers and other meds, and other than the possibility of a little regurgitation around heart valves, I don't think I have any other significant cardiac abnormalities. Without the meds, my heart rate was most certainly tachycardic....resting heart rate could be in the 120-130 range with standing being 160 bpm and beyond. Medication slows it down, but it doesn't stop the the skip-and-pause feelings I continue to have. As far as I can tell, these incidents are not harmful. I've been having them for over a decade, and there are not really any ill effects. I just view them as inconveniences. Being that I haven't yet died from such an episode, I have a difficult time taking them too seriously.

It's difficult to say how long it took me to decide if Mestinon was "beneficial"....I say this because it took me awhile to juggle it around in a way that avoided side effects. Overall, I think after a couple of weeks, I noticed that when under orthostatic "stress", I noticed less trembling, shakiness, and muscle weakness. I'm not less orthostatic in that I feel less light headedness or other symptoms of being up, but the lessening of the weakness is a big deal for me. I also noticed, RIGHT AWAY, that it helped my digestive tract move along a little more regularly. This, too, is a big deal for me....having bowel function working well enough to produce, um, a couple of movements a week instead of one every ten days is a definite improvement. So, for me, it is not a miracle, cure-all, drug....it's just one more medication that I can use to get a little relief from a few symptoms.

I can get "mental hangovers", too. However, something about the very act of talking really does it to me. I"m trying to digest a lot of this information. It really does seem as if there are several mechanisms most likely at play. Again, its sounding like a "perfect storm" scenario. If one should be so unfortunate to have some sort of NET defect AND have problems with other regulatory substances such as nitric oxide, and, just for fun, let's assume there's some sort of additional post-ganglionic autonomic damage that's occurred... Do such scenarios describe what's happened with some of us non-typical patients? I think so. I think it's why some can have very "simple" cases of NCS or even POTS and seem to respond very well to treatment and few associated problems while others keep spiraling in all directions with symptoms that no one can really fully account for.

The numbers I quoted above are due to my being on several medications. Without these meds, my blood pressure was going as high as yours, and still bottoming out if I stood up. I think that's what meds do for me....they certainly don't get rid of the problem, but I feel better with less variation when I stand or talk, or heck, even breathe! Funny about the "normal" thing...so many things I have always, and still do, consider "normal", only to find out that no, it's definitely not normal. And I manage to be shocked at everyone of these revelations!

I don't have flushing at all. However, talking does make me ill. It makes all of my symptoms worse, and my bp does some pretty wild and crazy things. My brother called last night, and we had a long talk on the telephone. Today, I couldn't get myself out of bed until 11:00. Since then, I've managed to walk the six steps over here to my computer. This has happened to me for years. I used to love to talk on the phone, but it's now become something that I can dearly pay for later on. Talking does raise my blood pressure significantly. I always thought this was normal and I was just sensitive to those changes. However, it's been caught in a medical setting that this happens to me. I've stood up and they have not been able to find my blood pressure. When I start talking, it will come up considerably...we aren't talking in the lowest of ranges, rather, it can immediately pop up to 120-130/80-90. God only knows what it does when I've been talking awhile. From the way they react when it does this, I take it that these kinds of swings are not normal. These swings probably explain why talking makes me ill....My blood pressure is probably going up and down repeatedly every few minutes.