erickamcc0523

and I quote, "I will be the first to say that there isn't much that I can do to treat POTS. I do hope to be able to give you a better quality of life, but I'm powerless to treat the POTS itself". And here I nearly didn't go to this cardiologist because I don't like going to the hospital where he is based! I'm glad that I went with my gut feeling again to see him, instead of asking to go to another doctor in a "better" location for me. He isn't changing my meds, because I am getting SOME relief from symptoms (my pulse is better controlled when I stand up, although I do feel pretty presyncoptic almost everytime I stand up), and he is concerned that since the Toporol seems to be helping some now, if I were to switch to something else, it might make the POTS worse, and possibly get it to a place where even the Toporol won't work. I asked him today about a connection between my recent diagnosis of Hypermobility Sydrome and the POTS, and he said that he wasn't aware of any specific connections, but that there probably was since it was highly unlikely that I had two fairly rare conditions that weren't somehow connected. He also asked me how I was coping, mentally and emotionally with my diagnosis, and agreed with me when I said it was fairly depressing to do too much reading about POTS and told me that since I was already educated about it, I shouldn't do too much reading about it... check up on it every one in awhile to see if perhaps there was a new treatment for it, but to not obsess about it. I also found out that he has few other POTS patients, so he understood why I wanted to come back in 6 months (he gave me the option of a follow-up in 6 months or a year) to see if he has heard of any new treatment for POTS. Again, I can't say enough good things about Dr. Baerman. I feel very blessed and lucky to have him on my side! His nurse is also wonderful, too. If anyone is in the Knoxville, TN area (or even not so close), I can't recommend him enough!!!

I wish I knew... especially since I've been put on metoprolol, I have been even more wiped out than normal. Yes, it's great that my pulse rate is a bit better controlled (fewer chest pains and a little less pressure in my head), but I felt much better before I was put on it. I'm just glad that I have another appointment with my cardiologist tomorrow. I've given the metoprolol a month, and I now think it's time to try something else. What helps somewhat is making sure that I don't get dehydrated, even slightly, as that will exaserbate any symptoms (especially the exhaustion) and if I'm really, really tired, a cup of half-caf coffee will help somewhat, but I have to be careful about having too much coffee, as I'll literally jump out of my skin. Also, even if I'm having insomnia problems, I'll still lie down, as just resting my body is better than not resting at all. Here's to hoping that we both have many spoons soon! Ericka

Does anyone also notice that they tend to get somewhat more emotionally distressed and upset when they're having bad brain fog days? I ask because my POTS symptoms, especially the brain fog, was really bad today... I finally made it to school, and to my disgust, there was no close parking spot, and two of the handicap spots were taken by someone with no placard or tag... I got so angry that I seriously considered keying someone's car for a few moments... but thankfully I recognized that was really stupid and the best thing was to go to security to have them take care of it. I really, really hope that they got a really fat ticket or towed for their inconsideration. And if they were indeed handicapped, then they need to do what I and every one who was parked properly did... go to the doc, get the form filled out, and pay the $21 fee for the placard. In any case, the fit of anger and temptations of vandalism are seriously not within my nature normally... but I've noticed more and more that when my symptoms are at their worse, then I'm at my worse. I need to know if there is anything that I can do about it, and if so what... and if not, then it would be nice to not have to run to the confessional every few days!!!

I have thought that my hormones are off, too, but when they were tested, they were normal... however, they could have been tested at the wrong time of the month. I am in the process of learning how to chart my cycles (the Natural Family Planning method... I'm not planning a family, but it can also be used to find out irregularities in the menstrual cycle) to see if there is a specific time of the month that I am having issues. I know the week before my menses, I have my worst symptoms ever (this past month, I actually thought that I had a stomach virus, as I was vomiting and had a low grade fever, along with all of the exhaustion and being extra tachy). Perhaps if I can find out WHEN I'm having problems, I'll know when to be tested to confirm everything.

Oh, I always joke about my brain running on just beans, because I have so many brain fart moments!! Probably one of the most disturbing moments for me was about a month ago, I went to confession. First, I could hardly remember what I needed to confess, and I kept talking like I was drunk or stoned or something. One spoonerism after another, not to mention that I kept forgetting words.... and then after my penance was assigned, I was asked to say the Act of Contrition, a prayer that I have known and prayed at least weekly for almost 2 years, and yet, I couldn't remember anything past the first sentence. One of the few times that I've actually cussed in the confessional (it was more like, "******, I can't remember it!"). Thankfully, my priest was wonderful, and tried to jog my memory by starting the next sentence, but even that didn't help, so he handed me a holy card with the prayer on the back. He saw how frustrated I was, and offered some very encouraging words. Oh, there have been many times of keys locked in the car, perhaps one of the funniest ones was when I locked them in my parent's running car. I had borrowed their Jeep for a few days. A little background: on a Jeep Cherokee, if the engine is running, you can't lock the car by pushing the button that locks all of the doors at once... you have to manually hit all of the door lock buttons on each individual door. I must be hypervigilant about locking doors, because I did just that. Thankfully, I didn't lock my cell phone in the car, and I was able to call AAA, who, because I had locked a running car, had a locksmith out there in about 10 minutes. I am very glad that I now have an electronic fob that locks and unlocks my car, and that I have gotten in a habit of doing so... less chance of locking myself out. There have also been times that I have locked my parents out of the house even though they were traveling in the same car I was and we arrived home at the same time... Again, I guess that I'm somewhat OCD about locking doors.

I don't have a cane or any assistance, but the law here in TN reads something to the effect of not being able to walk 200 feet without either assistance or needing to stop and rest, so depending on your state's laws, you should be alright. I was able to still get my placard without having to use the assistance of a cane or walker; just the fact that I have to lean against random cars and "take a breather", so to speak, is enough.

Depending on the state, you can print off the form for your doctor to fill out (actually, here in TN, the applicant fills out half and the doctor fills out the other half). In Tennessee, the law is that the applicant can't walk 200 feet without assistance or without having to stop to rest. I would google "Handicap placard (insert your state)" and see the exact requirements and to see if you can't get the form. Then I would go ahead and fill out your portion and at your next appointment, take it to your PCP and ask him to fill out the other portion, and explain to him what you explained here... that on good days it wouldn't be used, but there are bad days that you can hardly walk and that it would allow you to get more done. Plus, with my doctor, I mentioned that I was afraid of passing out in a parking lot and not having anyone to find me for a few moments, or even worse, a distracted driver running over me because they didn't see me lying on the ground. Good luck with getting your placard. On my bad days, I couldn't live without it!

My theory with genetics is a balance of nature and nurture... that genetics can make someone more suceptible to an illness (except in the case of say, Down's Syndrome and other disorders like that) much of the time, but environmental and other outside forces can cause it to "activate" or, if it's a mild case, become much, much worse. I had POTS symptoms even before both of my knee surgeries, the first being Dec of 2008, but they weren't nearly as bad as they are now. Now, if I hadn't had the knee surgery, there is a possibility that my POTS wouldn't have worsened, but who knows, I might have caught a virus or some other illness that would have triggered it just the same. My mother doesn't have POTS (at least a diagnosed case of POTS), but she has symptoms of fibromyalgia and CFS. She isn't hyperflexable at all (I suspect that I have EDS), but I recall that my maternal grandmother was, and my half-brother's (we share the same mom) daughter does have some hyperflexability and complains of knee and ankle pain without having any visable injury. She's pretty active kid, so I don't think that she has POTS either (at least yet), but since she's just 9 (almost 10), I'll keep an eye on her in case she starts developing symptoms.

Thank you for posting this... I wish I had read it before I saw a specific physician just this past Thursday. The first point, about the fact that the doctor might have a low self-esteem reminds me of a quip I read in a book (I think from "The Making of a Psychiatrist")... "Wiseass covers nervousness".

So, after my failed and somewhat wasted appointment at the geneticist this past Thursday, I have decided that I need to see someone who is actually quite familiar with Ehlers-danlos syndrome, and not someone who had to print off the symptoms to attempt a diagnosis (and then accuse me of having psychosomatic symptoms.... ...but that's neither here nor there). My gut is screaming loudly that I have EDS, the same dynamic it screamed that I have POTS when I first read the symptoms. Speaking of reading about the symptoms, the geneticist told me to not research EDS again as it would "confuse" me.. Anyways, I was wondering if anyone knew some an EDS expert, perferably in TN, but anywhere in the surrounding states (Kentucky, North Carolina, Georgia, or Virginia) would be alright. Actually, I am willing to travel as far as I need to, but as you all well know with POTS and other maladies I'm experiencing, traveling that far is VERY difficult. Again, I wish I didn't have so much brain fog at the time, because I would have told her to stay out of psychology and stick to research (probably not as nicely, though). The more I think about the appointment and what she told me, the more angry I get. I suppose part of it is being so sensitive to being called psychosomatic, since that's the same thing I was told the 5 or so years I was suffering with the nausea and stomach pain (and ended up in the hospital a few times on a morphine and phenergan IV) of gallbladder attacks. Oh well.. I must put that appointment behind me and focus the little energy I have on actually getting diagnosed.

It's more to do with the Vascular type of EDS, although the weak and extra flexible blood vessels (which are more prone to bursting) can't bring the blood back up to the heart and will allow it to pool, thus causing the POTS symptoms.

Where is Dr. Francomano located? I am still going to look around where I live to try to find a doctor who is capable of diagnosing EDS, but should that fail, I might try to make an appointment with Dr. Francomano. I want to be expecially sure that I don't have the vascular type, which, since I bruise easily and unexpectedly (and usually much worse when I get injured than would be expected) is a good posibility. I hear you about spraining something with minimal trauma... I can be walking, and my ankle will give out, and I'll limp for the next few days. My niece (the one with at least a 4 on the Beighton Scale) often complains of her ankle or knee hurting, with no obvious injury... in the past everyone has just thought that she was being a bit of a drama queen (if you knew her, you might think the same thing), but the more that I'm learning about EDS, I think that perhaps she might have a milder form than I do. I'm already worried about her being in gymnastics, doing flips, especially with hypermobile elbows. If she does have it, she at the very least needs to learn how to reduce the possibility of injury. Since the geneticist mentioned that the condition she diagnosed me with is inherited, I will probably mention this to my niece's mother the next time I see her.

Oh, I definately am going with my gut... it's scream EDS about as loudly as it screamed POTS and gallbladder before (I figured out what was wrong with me before the doctors did). The problem is I don't really know who to go to around here... And I'm not about to ask the geneticist I went to for a referral. I'm not discouraged, though... heck, after what I've been through the past few years, it has probably increased my strength and resolve to stick through everything, especially with the two other (correct, might I add) diagnoses that I've figured out. I was given propofol, which is a fairly new hypnotic drug... it's probably most famous because it was one of the drugs Michael Jackson was given right before he died that should have only been administered in a hospital setting... but when one is properly monitered (with O2 sats, heart rate, and blood pressure) it is fairly safe, at least as safe as everything else out there right now. Generally for colonoscopies and endoscopies, one is put under conscious sedation, basically you can still breathe on your own, but you're not responsive and are in a medically induced coma state.

The more I've been thinking (and also with the help of your post Sara) the more I'm convinced that I need to go to another Dr. This geneticist tried to convince me that some of my other symptoms were psychosomatic (maybe some in the past, but definately NOT the ones I'm still experiencing on a daily basis... I haven't been more anxious or depressed than most people normally are for at least the past 18 months). I was kind, yet firm, in letting her know that she was wrong when it came to that. Plus, over the phone she said that she knew about EDS, but when asking me about symptoms, she had a print off from which she read the questions (you know, history of hernias, strange scars... etc). Too bad I was having such brain fog yesterday, because I probably would have been more firm in informing her to stick to research and stay out of psychology. She insisted that the POTS and the collagen deficiency had nothing to do with each other. I probably ended up wasting the 2.5 hours I was in her office. Maybe not completely, since I was kind of confirmed that I am on the right path... She's just not going to be able to take me all the way. However, I am unsure of any other doctors in this area who might be qualified to diagnose EDS. Does anyone know of anyone else in TN, or perhaps GA, KY, or NC that might be able to diagnose me? Oh, BTW, depending on the day, I am a 8/9 or 9/9 on the Beighton score (and that's only because I don't test whether I can touch the floor with my hands w/out bending my knees on extra bad POTS days). As far as the endoscopy went, I had it earlier today... the propofol wasn't too terrible on my system... I did get some presyncope when I tried to stand up for the first time (and I nearly fainted when I was stuck for the IV... the nurse immediately lowered the head of my bed and asked for someone to get her a cold washcloth to put on my forehead, and sat with me for at least 5 minutes to make sure I was alright... If I didn't need to not have water at that time, I think she would have gotten me some water). I did fall asleep for the test itself. I do have a grade 1 (out of 4) esophogitis, so I will be put on two proton pump inhibitors, one prescription for... probably for the rest of my life, and the one OTC to supplement for maybe a few weeks. I might be able to get off of the OTC PPI in a few months, but hopefully soon I'll have some relief with my stomach. I still don't know if I will insist upon a colonoscopy, just so the Dr can take a closer look to make sure that all I have is IBS and not something more serious, but reading the symptoms, I'm fairly certain that it is just IBS.

I'm getting an endoscopy done tomorrow by my GI. I have never had propofol (the drug that Michael Jackson used) before, so I am somewhat nervious, though from what I've heard and have been told, it's somewhat easier on the system than versed is... I do hope so. My GI told me that although she has never heard of POTS, she is somewhat familiar with postural orthostatic hypotension, so hopefully she will become more familiar (and the anesthesiologist) with POTS by tomorrow. I do have a history of esophogitis and I have a hiatal hernia. I was also diagnosed with IBS today. I don't think that I will be having a colonoscopy, but I might, even though I'm not fond of anesthesia (I'll see how the propofol does), insist on having one done to make sure there aren't any damaged or diseased parts of my colon. The appointment with the geneticist was pretty good, too. I do not have EDS, as, according to her, I don't have the extra stretchy skin ("a hallmark of Ehlers-danlos syndrome") nor the family history, although just from hearing from others here who do have an EDS diagnosis without the stretchy skin or family history, I might seek out a second opinion just to be sure. She did diagnose a collagen deficiency with the symptoms of joint hypermobility. She doesn't think that this is the cause of the POTS, although I tend to disagree, especially with the fact that the blood vessels in my legs and thighs have been known to burst unexpectedly... and if those vessels are affected by this, it stands to reason that the rest are affected as well.

I was able to, probably out of just sheer exhaustion, finally make it to sleep... I still woke up several times feeling smothered. My POTS symptoms have been just HORRIBLE the past few days (at one point, I thought I was getting a stomach virus, I was so bad). I have an hour drive (two way trip) today, but I'm kind of excited (exhaustedly excited, though), since I'm going to a Gastrointestional doctor and a geneticist... I think the stomach problems are directly related to POTS and Ehlers-danlos syndrome... Been diagnosed with POTS, the geneticist should be diagnosing me with EDS.

Regardless of my position (on my back, on my side, or on my stomach), I normally have difficulty breathing (along with bad chest pains) while lying down, thus making going to sleep very difficult (why I am writing this at 1:30 am when I need to be awake by 8:00 am). I feel like I am suffocating, and it only is relieved when I sit back up again. I currently can't raise the head of my bed, as it is part of a bunk bed and would be too unbalanced to raise up. Does anyone else get this, and if so, do you have any tips on how to deal with it and maybe help my breathing and chest pains?

Normally when I get sick, my symptoms are magnified... I am starting with a stomach virus (thank you, mother!!!), and the past few days, I have been more tachy than normal (my usual resting pulse rate is around 80-90... it's been more like 100-110 the past few days)... I also have had more episodes of presyncope, and I'll shake very hard for at least 20-30 minutes afterwards. It's difficult enough normally for me to stay hydrated... I am SOOOOOOOOOOOO hoping that I won't have to go to the hopsital because of this virus. At least it's only 2 miles away if I should have to go.

I have some issues with muscle spasms and cramps, so I take magnesium... only occasionally, though, since only a third of the dose will cause me to have severe diarhea, which causes me to get dehydrated, which causes tachy and bp problems. I take not even half of the recommended dosage and it still does it to me. I haven't tried laxatives since my POTS got much worse, but I'm so afraid to try them, especially when just magnesium by itself causes such horrible symptoms.

If you think that you may have Ehlers-danlos syndrome, I would recommend NOT being put on BCP. When I was taking them (especially the Seasonique, but the monthly BCP would also cause this), I would constantly have a horrid bruise on my thigh or calf, I suppose from a blood vessel breaking. Once a bruise healed up, another one would form. Not that I need to use BCP for their intended purpose (I'm single, and celibate for the moment), I don't think that I could ever take them again, even if I weren't Catholic... if they caused an increase in the blood vessels bursting in my legs, I'm scared that it might cause other blood vessels to burst. Plus, they make my periods WORSE, especially the PMS (I was tired enough not on them... BCP x'ed that by 20).

It's been such a long time (9 years for Paxil and 7 or so for Zoloft) since I was on either drug, so I don't quite remember exactly what happened to me except I know that I actually lost weight on Paxil, and it worked pretty well for my depression at first, but after a relatively short period of time, it stopped working. I think once I was titrated up again, I slept most of the day, so I was taken off that and put on several other drugs (including Wellbutrin and Prozac) before I was put on Zoloft. I know that I was pretty much emotionally dead on Zoloft... had no emotional affect, and my self destructive behaviors and depression got much worse.... I think, though, like someone else said, it really depends on you how you'll react to certain drugs. Case in point, my mom has been on Paxil for about 4 years now, and has really not had that many problems (except for some weight gain, which could also be attributed to her hysterectomy and the fact that her weight has, throughout her life, yo-yoed back and forth, and she's in a period where she's gained weight). She doesn't have the problem I did with having to sleep alot on the Paxil, either. I'm sure you could ask 10 other people about their experiences on Paxil and you would get 10 different answers. In any case, you should be followed closely with a doctor, preferably a psychiatrist who is very familiar with psychotropic drugs, and have his/her number on speed dial in case you should get some really bad side-effects (so you can call to see if you need to change the dosage or immediately stop the meds or come back in for another appointment).

I've had those episodes, too... once while in the middle of Wal-mart with my friend a year ago... Scared him nearly half to death. Luckily I was able make it to the in-store BP machine to sit (and check my BP... it's been so long I can't remember exactly what it was, but it was much higher than my normal 115/60), because I would have fainted without sitting down at that time. Thinking my blood sugar was low and I was having a hypoglycemic attack, I ate a candy bar right then (I think a Snickers, which has quite a bit of salt, with the peanuts) and started drinking a water (don't worry, I paid for the empty wrappers.... got a few strange looks from the cashier... luckily my friend explained that I almost fainted with having a low blood sugar). The next 2 days, I could barely get out of bed... Even the exertion of rolling over would cause me to get very tachy and lightheaded. After a few days, the worst of it was over, thankfully. With subsequent episodes, I've had to actually take a nap afterwards because I couldn't even keep my eyes open and was SSSSOOOO exhausted. I know what you mean about the tounge feeling very warm and numb at the same times... sometimes the sensation will go down my throat, and it feels like even my lungs are affected. I will have shortness of breath at the same time. I also get periods of disassociation and depersonalization (I used to be a psych major) that I thought was part of being depressed (I've been diagnosed with bipolar and anxiety in the past... looking back, I think that, at least in part, it was the POTS, as mood swings and anxiety can be a part of POTS according to NDRF). My friend who saw me go through the Walmart episode said that my face was extremely flushed and that my pupils were VERY big and my gaze was fixed and glassy for a moment. I wish that he hadn't watched me go through that, yet I'm glad he was there, because I had to literally have a death grip around his arm to even make it to the BP machine. I just wish it hadn't scared him so much.

I am so sorry about you getting dropped from disability... I have seen many other people here get very frustrated over the process and it's only many years later, with the help of lawyers (who, of course, help themselves to a percentage of it) that they are able to get it. These are those who are genuinuly sick, either with Lupus, Fibromyalgia, or any other invisable but very debilitating disorder. Of course they won't get approved because of those who abuse the system, who go to a psychiatrist who proclaims that they are depressed (not that depression can't be debilitating... it's just some who fake the symptoms just to get a check), and they get approved the first go around. I get frustrated just watching it.... I can't even begin to imagine your frustration going through it. I'm adding my prayers to KC's prayers. I'll remember you at Mass this weekend and light a candle for you. Ericka

Mirry, I can relate to the weak and unstable ankles! Sometimes they'll sublux (somewhat dislocate, but not completely) just enough to cause severe pain, enough to where I can't really walk for at least 5 minutes. Sometimes it feels like it stays out of place for awhile and I have to move my foot around to try to coax it back into place. I haven't had to go to the hospital yet to get help with relocating the joint. Also, I have twisted my ankle just by standing, because it's almost like it buckles and the angle it does it puts alot of strain on my already bad knees. You should, too, get checked out for EDS, as some forms can be potentially life-threatening... I don't mean to scare you, but if you're found to have that specific sub-type, then you could at least be proactive and have regular testing done to ensure your health. A previous poster in this thread said that they have a yearly echocardiogram (basically an ultrasound of the heart and other blood vessels around the heart) to ensure their aorta is doing well. Plus, you might be able to get some advise on how to improve the quality of your life and how to protect your joints (the most vulnerable parts of your body if you do indeed have EDS). Just a question for other EDS patients... do you have random and unexplained bruising? I do at times, especially in my thighs and calfs. I think that it's a blood vessel that bursts randomly, and I don't remember any injury that would cause the bruise. In fact, sometimes the day before the bruise develops, in the same spot, it will be very hot feeling and it itches like crazy, and scratching makes the itching much worse. Then, the next day, I'll have a hideous bruise in the same place as the burning and itching sensation. It's very firm to the touch, like a hemotoma, which is why I suspect a blood vessel has burst.

So, I just posted recently that I have severe insomnia at times... and then days where I can (and have) slept all days... well, that's not the only "balance" problems I have. For those with weak stomachs, read no further... I'm going to try to be as non-graphic as I can, but that's pretty difficult when talking about digestion issues. . . . . . . . So, there are times that I have what I lovingly call rabbit or goat poo... it's small, rock hard, and hurts like heck coming out. I'm actually lucky that happens because normally that only happens when I have times where I can't go for at least 3 days in a row. Then there are days like today, where I'm constantly running to the restroom, and everything is loose and foul smelling (more than the usual foul smell), and it burns (like acid or something) like heck coming out. It seems that I have alot of mucus mixed in, too. I can't tell you the last time I've had normal poo. I know some of this is because I don't have a gallbladder anymore, but surely there must be something more than that. I have made an appointment for a GI next week (something done with some fear, as those were the doctors who told me I didn't have gallbladder disease and that the stomach pain and nausea was all in my head... wrongly, might I add). Until then, anyone have any tips or ideas that might work for me in getting everything straightened out somewhat? Or maybe just better deal with all of this?