TexasGrrl

Most of the hospitals here are very clean or they get sued, so I don't think that's a major problem here. What I have a problem with is not the physical hospital itself but the doctors and nurses IN the hospital. Particularly ER doctors and nurses. They are, by necessity, jaded creatures and don't have much sympathy for such mild problems as passing out or having a high heart rate. They see gunshot wounds, car accident victims, heart attacks, and other life-threatening problems day in and day out. To them, what we experience is laughable in comparison. I guess I can see their point, but then, they don't have to live with it. And they don't understand it, since trauma is their forte. The combination makes for a rather unhelpful and callous staff. I remember going to the ER once many years ago, back when I thought a high heart rate was going to kill me. I had been standing in line at the post office, and this was the first time I noticed that my pulse was high when I was about to pass out. I took my pulse and it was 160, and I sort of freaked out. I already knew I could avoid passing out by sitting down, so I plopped down in line and scooted forward until I got to the counter. When I got there, I called a friend of mine to pick me up and take me to the hospital. Once I got to the hospital, I explained to the nurse what was going on. I was laying on the gurney, and she took my pulse... normal, of course. When I told her it was only when I stood up, she said -- get this -- "Well, then don't stand up!" She passed along her thoughts to the doctor, who promptly told me that he had more "important" issues to deal with in the ER than a high heart rate, and booted me out. Don't stand up, indeed... Needless to say, that was the very last time I ever went to an ER for anything related to my POTS symptoms.

Indeed, I can testify that blood sugar spikes do indeed exacerbate POTS symptoms. I went on Atkins last year and found out just how MUCH relief I could get from staying away from simple sugars. I went off Atkins for the holiday season and indulged, but I found that the symptoms worsened almost immediately. It definitely makes a difference. I dont' think the blood sugar spikes CAUSE it, but since the symptoms are roughly the same, it certainly does worsen it. However, all of this takes place at the same time that the drop in blood sugar happens - about an hour after you eat, for the most part. If you're experiencing problems immediately after you eat, it's probably because the blood is routed to the stomach to help digest the food, which lowers your blood pressure. Normal body function but quite annoying to those with already low blood pressure.

Indeed an interesting thread. I view this as a POTS sufferer (due to EDS), but my sister (who probably also has EDS) suffers from extreme anxiety and panic attacks. She has been diagnosed with manic disorder. I am half of her support system when she has her bad times (her husband is the other half). Recently we both began to make connections between anxiety and my own symptoms, and we're wondering if her symptoms are just manifested in anxiety instead of just a racing heartbeat and low blood pressure. It would be interesting to put us side by side in a lab and run the same tests on both of us to see what turns up. In any case, I listen to her fears and feelings, and particularly when she is in a manic phase, she fears everything. But also, all the time, she focuses mightily on her symptoms and finds it hard to concentrate on solutions instead of the problem. It is, indeed, a tough cycle to break. WHile I can't empathize (I'm not in her skin), I can sympathize with what she goes through. She relies on me to give her building blocks to help her get through the rough times, and to tell her when she's overreacting or focusing too much on the problem. What I tell her is that every time she starts thinking about how bad it is, she gets scared of having another panic attack. That, in and of itself, propagates the cycle and brings on another panic attack. The only way to break the cycle is to notice when she's thinking about the negatives, and focus on the solutions. For example: She thinks "Oh man, yesterday was so awful! I couldn't get out of bed all day! I knew I was supposed to get up and take my meds so I could function and go to work, but I was too scared!! This is so terrible.. what if it happens tomorrow?" IF she continues on that train of thought, she will almost definitely have another panic attack and be unable to function again. However, if she grasps that one sentence "I am supposed to get up and take my meds so I can function" and holds onto it for dear life, then she can force herself to fight the fear and go take her meds, and then function. Once she's on the meds and stabilizes, she improves fairly quickly. I think the key is understanding that only YOU can break the cycle. You CAN choose to focus on the fear, the symptoms, what it's doing to your life... or you can choose to focus on what you KNOW you can do to get some relief, even if it's minor. Focusing on problems causes anxiety, but focusing on solutions brings some sense of control and calmness. I am not in any way saying that we CAUSE our problems, but we definitely can make them worse just by what we think.

Yep, typical POTS. I have the same problem. Fortunately, batting my eyelashes innocently at the nearest male usually does the trick for whatever I'm reaching for, lifting up or doing over my head. Except for the pesky washing the hair thing. Now, if I could just convince my husband that I always need someone to shower with me...

Dawn, I sympathize with your plight, but I must agree with Merrill. I do not know how POTS makes you feel, since it affects each of us differently. I am a POTS lifer as well, having EDS. I am fortunate in that I can work full-time because I have a seated job, and overall the coping mechanisms (and Clonidine, when it becomes bad enough) provide enough relief that I can just adjust my life to what my body will handle and, for the most part, forget it exists. Not that I can honestly forget, but after all these years, things have become second nature to me, like avoiding stairs, crossing my legs, clenching my calves, eating plenty of salt, and staying hydrated and cool. Avoiding sugar also helps avoid the blood sugar rollercoaster, which exacerbates POTS symptoms. All of these things are lifestyle adjustments that I work my life around, and I hardly notice I do them anymore. Granted, I have good days and bad days, but with time, I think most people can learn to make POTS not the center of existence. I must also state that Dr. Low, while he understands that it can be disabling, probably cannot make such a subjective and important statement without being your daily care physician. It puts him in an incredibly difficult position that is easily discredited by the fact that he does not see you every day, and the fact that he also knows how differently it impacts each person is an easy tool to discredit him with. And having him testify, only to be discredited, not only damages your own case but all the others who need disability. It is important to have doctors who are both experienced in the field and with your daily personal case be the ones to determine that you are unable to work, and not someone who has seen you twice. In any case, I will reiterate that I don't know your particular situation, but I think it's important to emphasize to anyone who reads this that most of us can get on with life and try to work our health problems into a life instead of working what's left of life into our health problems. I wish you the best of luck, and if you truly cannot work, I hope that you will find another doctor who will corroborate the first doctor's statement and you will get approved for SSDI. And if you are still denied, I hope that you will find a job that you can do despite your health problems. Much luck and hugs, Janet

I think the real answer to that question lies in the source of each person's POTS. POTS can be either primary - caused by imbalances in neurochemicals and/or adrenergic hormones - or secondary, caused by something else entirely. In my case, my POTS is caused by EDS, which IS hereditary, therefore it's entirely possible that it is hereditary in my case. However, to complicate matters, EDS does not always cause POTS, as many hyperextensible people will tell you. Therefore, it does not always manifest itself in everyone who indeed has the inherited disease of EDS. Take my family, for instance. I am the only person to have been diagnosed with EDS so far, but based on the diagnostic analysis Dr. Grubb used to determine I had EDS, I can deduct that my sister, mother, and daughter also have EDS. He used physical "tests" like bending my thumb and fingers back, among other things, to help make his diagnosis. My sister, mother, and daughter also have all the same characteristics that he based his diagnosis on. However, my sister does not have POTS, she has fibromyalgia and panic attacks (which have not yet definitively been linked with POTS and/or EDS, but the evidence is mounting). My mother used to have the same symptoms I have, but she "outgrew" them and didn't have them as bad. (My assumption in her case is that, as a ballerina, her calves were always sufficiently strong to keep her blood pumping enough to make her symptoms mostly tolerable.) My daughter, a gymnast, does not have many symptoms as yet, but I am beginning to see signs. Back to the original question... is POTS hereditary? Well, it certainly CAN be, if you take the fact that EDS is inherited and EDS can sometimes cause POTS. But it's not ALWAYS. And even if it IS inherited, it does not mean that people who inherit it will have symptoms even close to what some of us experience. Each person's body is a melange of their own personal traits, chemical balances, and physiology, and what is truly a problem for one person may not manifest itself in the same manner in another.

Bank teller. Blackjack Dealer. Shoe salesman (bending down a lot!). Store stocker. Jewelry store salesperson. Car salesman, esp. during the summer. Hostess at a restaurant. Bartender. Tour guide at a museum. Cafeteria worker. Postal worker. At various times, I've considered most of these but for obvious reasons.. no! I actually used to be a checker at a grocery store when I was younger, long before I was diagnosed. I was pregnant, too! Fortunately, I ate tons of pickles while I was pregnant, which made my ankles as big as fenceposts, but probably helped me feel half decent... and the checkout stand had a little place for the checker to help bag that was right by the place where ya stand, and since there were never any bags in it, it was a perfect place to sit down when I got to feeling a bit woozy. Sure makes ya begin to wonder what we actually CAN do! Me, I do mostly computer stuff, so that's a relief!

OH yes, we have been talking a lot about migraines lately! I suffer from migraines as well, although I'm not sure mine are caused by the same mechanism that causes POTS. My POTS is caused by Ehlers-Danlos type III -- my blood vessels are too stretchy, which causes the POTS symptoms. I don't think (but of course I'm not sure) that any of the neurochemicals are contributing to my problems, so that wouldn't be the case with the migraines. However, the EDS might contribute to them, but my neuro doesn't know. He thinks it's probably the fact that I have 2 bulging discs in my neck, which cause muscle spasms, which bring on tension headaches that quickly develop into migraines. Prior to a month ago, I was taking butalbital as an acute treatment but no preventive (my prior doctor felt they were just tension headaches). However, I recently saw a neurologist who prescribed Elavil (25mg) daily to try to prevent them, and Relpax as an acute treatment. (I haven't gotten the Relpax yet because the doc and insurance company are fighting about it.) I've been on the Elavil for 2 weeks, and yesterday I had a migraine that was different from the others - it was more of a classical migraine, made me throw up.. and came on very quickly. Usually I have several hours' notice before it gets bad, but yesterday I only had about 30 minutes, and by the time I took the butalbital, it was evidently too late. Anyway, I don't have any answers for you, but I empathise!

Mary, I'm so sorry to hear about your ordeal! I've never had a migraine bad enough to land me in the hospital - thank goodness. I can't imagine what that'd be like. Avais1 - I haven't tried the ice cube on the carotid. Interesting theory. Is it the cooling of the blood that flows through there that causes the blood vessels in the brain to constrict, or some other mechanism? Fortunately, I haven't had a migraine since the first night I started the Elavil. It might just be coincidence, but I'm not looking a gift horse in the mouth. I started the full dose (25 mg) last Tuesday, and it seems to be making me pretty groggy for the better half of the day, but I'm going to give it some more time before asking the doc if I can go back down to the half dose I started on. Gotta say one thing about the Elavil, though.. don't know if this is a long-term effect or just an effect from starting the meds, but it sure is nice to go straight to sleep at night instead of lying there in the dark with my mind reeling like usual. It's like being able to take a sleeping pill EVERY night AND prevent migraines! 15 minutes after I pop the Elavil, I'm off to sleep like normal people. Too bad I still cant wake up like normal people, though. Before the Elavil, I always described waking up as being something like clawing my way up out of a swamp. Now it's like clawing my way up out of a swamp with concrete blocks tied to my ankles. Ugh.

Wait!! ABDOMINAL MIGRAINES? OMG... another question of my life may have been answered.. I don't think I had these as a kid, but maybe this sounds familiar? This has happened twice, with no explanation. I know abdominal migraines are usually accompanied by vomiting, but maybe it can happen without? First time was a week before my wedding. It was late at night and my husband's best friend had just arrived. I hadn't eaten anything all day and had a sausage for dinner. Within a few hours, the stomach pains started - worse than any I'd ever had. It was definitely in the upper abdomen - it felt precisely like the stomach was sort of going into labor or something. I took some Maalox, thinking it was the sausage. It did nothing, so I tried some pepto-bismol, which either made it worse or it just got worse on its own. I was doubled over with pain for no apparent reason, and despite the fact that I protested, my husband took me to the ER. The cramps continued until about 4 am. The ER doctor was quite rude to me after the Xylocaine cocktail he gave me had only a minor and temporary effect. I was falling asleep between cramps, then waking up, sitting up and doubled over when they struck again. The ER doc said I was faking it and threatened to throw me in the hospital knowing I was about to get married. The pains finally passed by morning and I ended up missing my own bachelorette party the next evening because of the drugs he gave me. It didn't happen again for about three years, then I had another (my last) bout. Since the ER didn't help last time, I didn't bother to go in the second time. I didn't take anything for it, either, since nothing seemed to help. But I had the same symptoms - very intense, labor-like pains in my stomach for several hours. It eventually went away on its own. I hadn't eaten anything weird the second time.. starchy mild foods for dinner. I haven't had another episode like this, but I always wondered what the heck was wrong. Even though I was 20 and 23 when I had these episodes, and had already had my first migraines (with aura) by then, do you think this could have been an abdominal migraine? By the way, as a child I was very sick. I am lactose intolerant and they had me on protein-fortified sugar water for most of the first year of my life. At one year old I only weighed 12 pounds, and my mom says I was always screaming even though I didn't have colic. I don't know if that's related, but I guess it could be... Any ideas?

Merrill, He put me on 25 mg/day of Elavil as a prophylactic.. hopefully to avoid getting the migraines to start with. (At 150 mg, Elavil is an antidepressant, but at low doses supposedly treats nerve pain.) He also switched me from Butalbital (which he thought was causing rebounds) to Relpax, but we're still fighting with the insurance company to pay for it. Since it's $260 for 30 pills, you can bet I'll just make do with the Butalbital until the insurance company gets its collective head out of its butt. I've tried neck stretches, heating pads, ice packs, and almost anything else you can think of, but all any of it does is postpone it for an hour or so, if that. His impression is that the bulging discs are, at least in part, causing the migraines, but that this is the appropriate first-line treatment. Traction, cervical collars, etc. might be down the road, and at the far and hopefully distant end is surgery. Some of you that know MightyMouse may remember she's had several neck surgeries to repair herniated discs in the same locations. She has EDS III, as do I, so I think I'll learn from her experiences and avoid surgery for as long as I possibly can. There is little doubt in my mind that at least part of her poor recovery has been due to the EDS, and I don't want to have to go through what she's been through unless I can't function anymore. Certainly MM waited that long, so I can too. Besides, he doesn't think that the discs are contributing to the autonomic problems, at least not yet, because they're not putting enough pressure on the spinal cord yet. Eventually, he says, they probably will. He did warn me that a small number of patients have dry mouth, hypotension, high heart rate, etc. with Elavil and that I should stop it immediately if I notice a worsening with it. So far, I'm on half the 25 mg per day, and I haven't noticed any increase in symptoms. He's got something else up his sleeve if the Elavil does that, so we'll see what happens. I went for 2 months without any headaches until the day before the appointment, which was Wednesday the 23rd. I had another last night, and waited too long to take the butalbital. I took another a couple hours later, but it didnt help much, so I eventually quit trying to fight it and just went to bed. Fortunately it was gone when I woke up. These headaches are real stinkers, but fortunately since I've had the Butalbital, I haven't had one get a full head of steam. Now that's debilitating.

Well, I just got back from the neurologist about my headaches and he said they were definitely migraines (they had previously been diagnosed as tension headaches). He knows about dysautonomia and says that he doesn't think, in my case, that it's directly related... However, I have bulging discs at C5/6 & C6/7, and he said two things: A) the bulging discs are probably playing a part in my headaches by causing muscle spasms which start a tension headache which then goes straight to migraine... He sees dysautonomia frequently in people with bulging or herniated discs in this same place. The second really isn't big news to us all here, but it does lead to a tentative and empirical connection between dysautonomia and migraines, I think.

Dr. Grubb also prescribed Magnesium for me; it didn't work. He also prescribed Bextra for them, which might have been like peeing in the rain. I couldn't tell that it did anything at all. I have an appointment with the neurologist on February 23rd. Hopefully I'll be able to get my MRI from the hospital where it was done and bring it to him for review. Fortunately, I haven't had a headache in a little over a month, but they'll be back... they always are.

Hi Dizzy, I don't have fibro, but my sister does. She manages it quite well and has learned coping mechanisms for dealing with it. Hopefully you will be on the right track with that soon. I wish I could tell you what she does, but I don't know all of what she does except to stay warm, because cold seems to make it worse. As for the POTS & CFS, well, those are usually concurrent diagnoses when CFS is in the picture. Not all CFS patients have POTS, but many do. So they're probably linked. And as for CFS, my sister's ex had that about 10 years ago and it took a couple years, but he healed from it. He still tests positive for Epstein Barr but he doesn't have the symptoms like he used to. He leads a normal life without fear of what we go through every day. There is hope! And welcome to our group

Nina, Nina.. you know what to do for the itchies! Benadryl or Tagamet work great, if they don't interfere with anything else...

Hiya Nina, Sorry about all the pain in your fingertips - but you're right, at least the nerves are still there!! I wish I had some profound platitudes about how the PT will all be worth it in the long run and you'll be as good as new before long... but I won't insult your intellect like that. Instead I'll just give you a big ole Texan hug and send good thoughts your way. You haven't scared me about the discs... I suspect I will continue to have neck problems. My neck pain seems to have cleared up for now. My idget GP gave me a script for muscle relaxers, which I rolled my eyes at and didn't fill. I have an appt with the neurologist (who's only 33, heaven help me) the end of February, and I'll discuss it with him then anyway. Seriously considering changing GPs now.. only by nearly brute force did I manage to get him to pull me back from the brink of a serious kidney infection today. I have a long history of UTIs, which lately have only been responding to Cipro and not any of the first-line -cyclines my old GP used to give me. Last Friday I went in after 2 days of symptoms and he gave me Bactrim. I didn't know it was a rather weak antibiotic. By yesterday, I was in more pain than ever and running fever. I called the nurse and told her, but apparently she didn't tell the GP about the fever part, because his instructions to me were to drink water and cranberry juice. HE-LLO... I am practically swimming in the stuff. Anyway, I tried to reason with her but she was steadfast. THis morning I was running 100.5 fever so I called the nurse back and told her that if he didn't get me something strong TODAY that he would be treating me in the hospital by Friday - which would have been likely. So, I got in this morning, got a shot in the butt and a script for 750 mg Cipro - the big guns. THis evening my back is hurting, so my prediction was probably right. Anyway, at least I'll only have a day or two more of symptoms before the Cipro will have killed it off enough to stop hurting. Sorry to hijack your thread, but I know you understand...

I did a self-study a while back after I bought a blood pressure cuff and found some interesting information. I conducted this test by measuring my bp/hr while supine, then while sitting, then while standing. 1 minute intervals, swapping arms each time so blood congestion wouldn't skew the results. I measured while standing every minute for 10 minutes. After I charted the results, I found that my BP and HR lines would see-saw, intersecting across the chart. First reading, BP drops and HR was high. Next reading, HR drops to something approaching normal and BP goes high. And so on and so forth, for the entire time. I have EDS III. It was apparent to me that my body was trying to cope with what it knew it couldn't do (tighten the veins in the legs) by modulating HR and BP. When the BP went up, it slowed down the heart rate because it didn't have to be that fast to get oxygen to my head. When my body realized that my heart rate was slowing, it let off the BP and the heart rate went up to compensate. It's like riding in a car with someone who can't hold a steady speed but is constantly going faster/slower/faster/slower. Sure wish our bodies came with cruise control!! Anyway, I personally think it has a lot to do with what your particular cause of POTS is, as to whether your BP drops or not, but it is definitely not always part and parcel of the whole POTS gig.

1. Name: Janet 2. Age: 30 (31 in March) 3. Dx: POTS/NCS due to EDS III 4. Age at dx: 28 5. Where you live: Why, Texas of course! 6. Symptoms at worst: feeling faint, dizzy, nauseated, tremors, sweating, headache, chest pain, unable to stand, vertigo, HR from 115-180 bpm on standing, extremely tired, numbness to hands and arms, bladder problems (retention). (I swiped this from Laura but it's pretty accurate) 7. Symptoms at best: Same as above but to lesser degree. Able to function better. 8. Medications/treatments, etc. that didn't work for you: Florinef, beta blockers worked but I was allergic 9. Medications/treatments, etc., that do work for you: Midodrine, but only slightly. Catapres (Clonidine patch) seems to work the best for me. High salt and low sugar diet help immensely. I should note that I am not on Catapres all the time. I hate taking anything on a daily basis, even in patch form. My symptoms wax and wane, and when I have a flare-up, I start with the Catapres for a few months, then stop until they get bad again. Most of the time I am pretty functional and I hold down a full-time job and normal life. I just have limitations that I'm aware of.

Nina, Nina, Nina... You are a true glutton for punishment ***** about your bad news.. what on earth is going on, anyway, you thinK? Scar tissue from your surgery... more herniated disks.. ?? Good luck with that percoset.. I know you like it.. but it never has done me a bit of good except to maybe make me a little drowsy. Hope it at least takes the edge off your pain... *big hugs* except for your arm... Hope you can get moving on your MRI soon. As for me, I'm waiting to hear back from my doc about my neck. Seems like it should have gone away by now, but it's still there, though a bit less intense. And the Bactrim he gave me for the UTI hasn't kicked in after 4 full days, so that's sort of odd too. My old GP used to give me Cipro, so maybe my flora is resistent to something like Bactrim. Anywho, hugs and smooches.. J

I hate that. I had a similar experience when I went to refill my butalbital a couple months ago. The script was written by my (now retired) prior GP, and they wouldn't refill it. They'd also lost the prescription my new GP had given to replace it... so I lived in fear of getting a headache for three days while they got around to calling my new GP... Peace to your pain.

My GP told me he's going to refer me to the neuro/headache specialist here. I haven't gotten the call for the appointment, and have no idea how long it might take to get in to see him. Is this urgent enough that I should do something sooner than, say, a couple months from now? It might take that long to get in to the neuro. Ich, EMGs are awful. I had one done when they diagnosed carpal tunnel. I'd forgotten about that, it's been so long ago... I'll try the ice tonight and see if that helps. A bit of reading on the subject seems to indicate that it's either due to the bulging disc or possibly it has fully slipped now. Crud! Just when I thought I had all my medical problems relatively under control... *sigh* Hope your EMG passes quickly and with as little pain as possible.. *hugs*

Hi yall.. In another thread I mentioned that an MRI a couple years ago showed a reverse curvature of my C-spine and a bulging disc at C5/6... Well, day before yesterday I woke up with my neck really hurting bad. I figured I just slept on it wrong. It was very stiff all day, almost like the muscles were just tight and needed to be stretched. Today, most of the pain is resolved, but it has left behind another pain I've never felt before. This pain is dull but specific in location - about three fingers up from the prominent bony part of the spine at the base of the neck - and it increases significantly anytime I cough, bend over, sneeze, etc. Even clearing my throat or swallowing makes it flare up. Is this something I should be concerned about, or could it be muscle spasms?

Mary, Yes, my mom has started having these headaches in the last year or so as well. We both take the same drug to stop them. Hers aren't as frequent as mine, but she has had a couple of them last 3-4 days in recent months. I hate taking the time to go to Houston, so maybe this local guy will have a clue. I'm afraid that I wouldn't know if he had a clue or not, unfortunately... but I'll see him and see if I can find good signs of docs that know what they're doing. Incidentally, my mom probably also has EDS, like me. Since I know my dad's family doesn't have any of these symptoms, and my mom did when she was younger (the POTS, I mean), plus she's always been very flexible. It makes sense that the headaches would be part and parcel of the whole POTS gig. I have a daughter, too, who I am watching very closely as she goes through puberty to see if she shows any signs of POTS or these headaches.. Thanks for the additional info, Mary... will keep you all posted.

Tuna keeps you stable because it is positively LOADED with protein. One 6.5 oz can packs 42 grams of protein for a mere 192 calories. Protein keeps your blood sugar stable, so that's why you feel better after eating it as opposed to a plate of pasta or potatoes. If you must eat pasta and potatoes, eat them with enough protein to slow their absorption into your bloodstream. While the other aspects of your diet may be trial and error, this is pure scientific fact. Spikes and drops in your blood sugar WILL make you feel even worse than you do already, so you'll need to do what you can to keep it stable.

Sorry to hear your day was so rotten... A helpful hint.. when you feel bad or feel something coming on, steer clear of sugars and simple carbohydrates. Focus more on proteins and complex carbohydrates. Otherwise, you'll spike your blood sugar and exacerbate your symptoms. A better choice of snacks would have been something salty and filled with protein, like nuts, beef jerky, pepperoni, etc. As a matter of fact, I found that many of my symptoms decreased dramatically when I went on Atkins last year. I realized that all the simple sugars I'd been consuming were increasing my symptoms. Symptoms of high blood sugar and/or the drop in blood sugar that comes after a spike: * weakness * dizziness * fast heart rate * hunger While that isn't usually the *cause* of our symptoms, it certainly won't help, and I'd wager it turned your day from simply a worse than normal day to a really bad day.