Amber

I can relate....sometimes I can't even sit up, let alone stand, without feeling like my heart and bp are going crazy. I feel like I'll pass out if I don't lie flat. I actually more than met the criteria for pots even in the sitting position so its certainly possible to have symptoms even when you're not standing up. Have you been checked for adrenal gland problems like pheochromocytoma (sp?)? Sometimes the adrenals can spit out too much adrenaline and that can make your heart rate go haywire. Also make sure you aren't getting any stimulants like caffeine either in foods/drinks or even in supplements. Also consider whether these episodes might occur after eating as that can cause blood to rush to your abdomen for digestion. This can cause drops in BP and rises in HR. Have you tried a betablocker to slow your heartrate or midodrine to raise your blood pressure? They might help.... I can't say about the SSRI's because I have always reacted badly to them but some people with dysautonomias do use them. good luck and good health... 8 )

I was just diagnosed with low frequency hearing loss and was wondering if that is common in people with Dysautonomias..... From what the audiologist said most people lose their high frequency hearing so its abit unusual for it to be low frequencies that give me trouble. I have a tough time hearing men speaking especially in loud environments. It doesn't seem so much a volume problem but rather that the words jumble together......very frustrating and embarassing to always ask them to repeat themselves. The doc did mention that this type of sensorineural hearing loss is seen in people with Fibromyalgia (which I have as well) so thats probably the origin of it for me but when I asked if autonomic problems are related he said absolutely yes. So I guess I'm just wondering how many of us have low frequency hearing loss....

I was 9 weeks early.......never could tell time as a kid!

Yes...me too. I have vortexes all over my house that randomly pull me in and drop me to the floor....... They only seem to grab me though..... very mysterious...... 8 )

Thanks for all your responses. I guess its a trial and error thing. My doc knows nothing about pots it seems and my specialist literally spends less than 5 minutes with me during my appointments. He just checks my vitals, (or has the nurse do it beforehand), and sees my meds aren't working well enough, doubles my dose and then leaves..... I'm still trying to ask him questions as he's walking out the door. Maybe this coming appointment I can tie him down to ask him about trying provigil..... Flop... You're right...I was forgetting that not all people with Dysautonmia have a mitral valve prolapse like I do....I think it would be considered a 'heart condition' but I'm not really sure since many docs consider MVP relatively benign.

I have these episodes also and the only explanation that I can come up with is that maybe decreased blood flow in our brains can affecting the motor/muscle control areas while not being severe enough to make us actually lose consciousness. (I have no idea if this is even possible but I can't figure out any other reason for it.) When it happens to me I go competely limp. I can hear whats going on around me but can't move, see, talk etc. To others I appear to have fainted. Once a nurse was around when it happened and I could hear her tell my mother that I wasn't even breathing. Luckily it was a quick episode. Sometimes I have milder ones where just my legs give out and I have no control of them to stop from falling.....its worse when my arms go too because I can't even break my fall. A doctor thought it might be cataplexy from narcolepsy but the tests came back negative for it. I'm sure its somehow related to POTS/low blood pressure because it happens 6 times the day I had my TTT and it's also happened when I was having blood drawn. Its a mystery.... 8 )

I've noticed that a bunch of people here are using provigil/modafinil for fatigue. I would love to try it (because I have CFS as well as fatigue from POTS) but my hubby was just prescribed it for a sleep disorder and as I was reading the information I noticed that it says that its not for people with heart issues, valve problems, arrythmias, those who are on betablockers etc. So I was wondering how Pots patients can use this medication? Is this medication dangerous for us? Just thought I'd get some first-hand experiences before I beg my doc to put me on it.... 8 ) thanks

Mine is usually 1 or 0 but I was told that was common for people with chronic fatigue syndrome. My docs never seem concerned by it.

Sorry for what you're going through.....I can't offer much other than to say that I get that strangulating feeling when I have codeine (like in tylenol 3's). I have no idea why but it scares me so much I no longer use any pain meds with codeine in them.

I don't have an EDS diagnosis but I've always noticed that when I pull open doors like at mall entrances my arm always pulls out of the shoulder joint. It usually goes right back in but sometimes can be tender. Also when I lift my leg to put socks or pants on when I go to put the leg back down I always get that bone-on-bone clunk as though the leg bone didn't go back in the socket at the proper angle. That one hurts more. As a child my mom used to tickle my sister and I and would pull at our toes....my sister used to laugh but I always found that so painful because my toes would temporarily come right out of the socket. Sometimes when a bone goes back in the socket it feels like something else got trapped in there with it like a ligament or bit of muscle. This happens alot in my hips and it can be painful and can last days. I also have 'loose' ribs, especially the lower ones. Sometimes when I am just laying still my breathing actually pushes my lower ribs in and out and they make a popping or clicking sound. I can't do much with my ab muscles without those ribs moving around to the point that my costochondritis acts up. Again, I don't have an EDS dx but then I don't know if my doc ever looked for it. I can't really say if its normal though my healthy friends don't seem to have it happen to them. Sometimes I think that the only thing holding my body together is the tight muscles from my fibromyalgia! If they ever cure the FM I might just fall apart... 8 )

Nauthiz, You aren't on Midodrine by chance are you? Just wondering since I get some leg pain from it sometimes. I have fibromyalgia too so I'm pretty used to leg pain and its not bad enough for me to stop the midodrine. Sometimes its just a feeling of pressure or tightness and sometimes an ache. If you are on any prescriptions you might want to check their side effects for that...those darn electrolytes could be the culprit too.

Sorry for what you went through and glad you figured it out. I had heard that sleep medications commonly cause depression...even natural ones like melatonin which is why they are often not recommended long term. I know how scary the halucinations must have been too. I go through spells where I hallucinate before just falling asleep and when I wake up....often accompanied by sleep paralysis. My doc thought I had narcolepsy for a while since these are common symptoms of it but I think I was just really sleep deprived and my brain was rebelling! I would hear or see an intruder in the house or standing over me in bed.....once I saw a race car crash through my bedroom wall as I was falling asleep. Weird but thankfully they only happened at night and never when I was up during the day.

I can't do coffee, tea or caffeinated colas. Chocolate even gives me trouble. Tachy, shakes, short of breath, nausea, lightheadedness and overheating result. Then later the fatigue kicks in worse than before. For me its not worth it. I feel like I'm running a marathon and even laying down doesn't help. I envy those who can....sure would be a nice pick-me-up in the morning.

thanks for the reply Dani. I bet you were thrilled when your skin cleared up! I was really hoping yasmin might be the answer but no luck so far. I'm thinking of seeing an endocronologist just to find out if the birth control pill is doing enough to regulate my hormones or if its just a waste of time. It seems like it should have been the first step to have my levels checked when my body went haywire and the hormonal symptoms started but my doc just suggested Yasmin and that was that. I feel like every time I see my doc I'm telling him what tests I need and what type of doc I need to see and why....Isn't that supposed to be his job? I don't think he appreciates it but if I left it up to him nothing would get done. Lol! I think deep down he thinks I'm a hypochondriac, even though I have a laundry list of legit medical conditions.

I am just wondering if anyone has noticed a correlation between using BBs and acne. I started Metoprolol this time last year and within a month or 2 developed a strange kind of acne similar to the cystic type. They are painful and deep and last a long time. The dermatologist says its probably the result of excess androgens and put me on Yasmin (birth control) to regulate my hormones but its been 5 months with no improvement. I really wonder if it isnt the result of the medication either directly causing the acne or throwing my hormones out of whack. I am also experiencing some weight gain, facial peach fuzz and other PMS type hormonal symptoms. Veru frustrating to look have acne when I'm in my 30's!

I used a wheelchair for about 10 years....half of that time I even used it in the house but eventually just when I went out. Now I just use my cane but many days I sure think of digging out the chair again. I have CFS and Fibromyalgia too so I can't say for sure if the wheelchair use is wholly attributable to POTS.

I find that one cup of green tea and I'm running to the bathroom every 5-15 minutes for the next few hours. For me its a strong diuretic which I would guess is bad for dehydrated Potsies.

I hear ya! I used to get sick all the time too. A few things that I've done that seem to help prevent illness are: A) If I go shopping and need to use a cart I always wipe it down with hand sanitizer first and keep using sanitiser often because I tend to touch things alot when shopping. Also keep the paper towel you use to dry your hands in public washrooms and use it to protect your hand when you open the door to leave. Alot of stores now have a garbage can outside the washroom so you can throw it out after you've exited. I use a higher end filter on my furnace, one that catches smaller sized particles of dust/pollen/bacterias etc. C) I replace my toothbrush often and use a toothbrush holder with a uv light thats designed to kill bacteria and viruses after every brushing. This prevents me from reinfecting myself when I have been sick. D) Avoid public places as much as possible and especially children who are always sharing illnesses with each-other and everyone else. Of course this is a hard one if you have kids yourself. E) Don't be afraid to tell people you know not to visit when they are ill. If they still show up wear a mask or let them wear it. F) Keep on top of allergies and other things that can turn into infections if not properly controlled. Sometimes allergies turn to sinusitis which can lead to repiratory infections etc. Also, watch for signs of yeast infections following antibiotic use. Simply eating yogurt while on antibiotics can help prevent these nasty infections. Of course none of these is foolproof but I have been really lucky this year and last year...no flus or colds or other infections...... thats a record for me. Amber

I find it difficult to make and maintain friendships because of my illness. I'm barely out of the house so opportunites are slim but even when I do meet people I find its too hard to keep friendships. I'm always having to cancel plans because I'm not well. I also never feel comfortable with people coming over to visit me since my house is always a disaster zone and its too much work to clean it. I hate when people show up unannounced since I don't have time to tidy or build up my energy to visit. I also feel really bad when people invite me to their place for dinner or something and I am never up to reciprocating. It's also hard to convince people that they really need to be careful not to visit when they have colds and flus. I guess it comes down to that fact that having friends requires more energy than I currently have. I am lucky to have good family that keep up with me by email and don't expect much of me. I also have a great husband who works from home and is a homebody so I always have his companionship. I guess one or two really close/reliable friends or family that truely understand are better than lots of friends that don't understand. I used to feel like my old friends abandoned me (and some really did...they just couldn't handle it) but like some of you, I realise now that alot of it was my doing since I would always turn down their visits and plan-making because I wasn't up to it. Theres no maunal on how to be a good friend to a chronically ill person so I can understand how many just silently slip out of our lives because they don't know how to be there for us. just my two cents..

fibromyalgia maybe?

I have had this for years but always attributed it to my fibromyalgia. I get such big lumps/knots that they feel like goose eggs sometimes. They often come with headaches too. I am assuming its the tightening of scalp muscles and fascia. I can't say whether its a POTS thing for sure since I have several overlapping conditions but I did just read something recently about 'coat hanger pain' on this thread or NDRF where they were saying that shoulder/neck pain and tightness can be caused by the brain stealing blood flow from them when not enough blood is reaching the brain. The blood and oxygen starved muscles then contract and cause pain. I wonder if they same thing can cause the knots on the scalp and forehead.....seems plausible..... Never really thought about it til now....

Except for when I had my TTT the only times I ever actually did pass out was during blood tests when they took more than a few vials. The nurses would always assume I was just squeamish no matter how many times I told them I wasn't. I could give myself a needle without no problem and can watch others getting needles just fine. They never seemed to believe me though and always told me to just look away. The first time it happened I was laying in bed with scarlet fever and they were taking blood for testing. I got nauseaus, sweaty, and faint. I was only 8 or 9 at the time. I am pretty sure I've have dysautonomia since I was little. Another time I passed out so completely the nurse told my mom I wasn't breathing. Scary. Now I avoid having large amounts drawn at once and I would never consider donating blood. That would be the death of me! LOL!

Do you experience an increased heart-rate with ritalin, adderall or provigil? My sleep doc was going to put me on a stimulant for my fatigue but we were worried about tachycardia and so we haven't risked it....

Sorry you had such a rough time. Just wanted to let you know you aren't alone...I can sure relate. I was lucky in that it only took me 9 minutes to pass out but like you they were horrible minutes so I was actually relieved to pass out. I was feeling so nauseaus and sweaty and was breathing really short rapid breaths because of the nausea. Towards the end I couldn't see either. The wierd thing was I was in a semi-concious state and trying to fight passing out but all I could do was move my head so I was sort of thrashing it around. I remember the tech saying "its okay...don't try to fight it." It was hard because you feel so lousy and you panic because you aren't thinking straight. I remember someone on the forums saying that it feels so much worse to have prolonged pre-syncope symptoms than to just pass out and I would agree. Just let me pass out and get it over with! LOL! By the way, I also had the muscle pain. Like when you stomp on your foot when its really asleep or as the feeling is just coming back. Mine mostly happened after I woke up and was laying on the table. Not fun. I would have to say though that it was worth it to get the diagnosis.

BJT22 - Does your edema cause pitting? Just wondering since I seem to get huge some days, mostly in my belly and hips area, but I also notice it to a lesser degree all over. However my doc just assumes its fat since there's no pitting in my ankles. (I can't seem to get through to him that there is such a big and sudden difference in my weight and waist size when this happens that there's no way it could be fat. It only takes minutes to come up sometimes.) The only place I ever notice pitting though is in my face sometimes. I am referirng to the type where your skin holds the imprint of your finger after pressing. On the other hand I do seem to always have sock lines and dents in my skin around my midsection and legs from my pants but I don't think that counts as true pitting. I have been tempted to try a diuretic but my BP is already low and I'm scared it might make it worse. Can't seem to figure out how to deal with it right now.....just really hate being able to get in my pants in the morning easlily and later in the day I can barely do them up they are so tight. I also feel heaviness and aching in my chest in the mornings but have no idea if its related. Interesting.....