imapumpkin

Hello friends, I haven't posted in a while but I'm having a concerning new development to my myriad of health issues and was wondering if anyone else has had an similar experiences. Lately I've been having trouble with my blood glucose level. I am not diabetic, but am prone to getting low blood sugar sensations when I haven't eaten for a while. But since I have gastroparesis, I am always having small meals or snacks throughout the day. Regardless, lately I often feel weak, shaky, nauseous, irritable, a general feeling of unwellness, and like I desperately need to eat, even if I haven't been fasting. This is withing 2 months give or take of upping my Mestinon. My POTS specialist recommended I went from taking 3/4 of a 60 mg tab daily (1/2 at lunch, 1/4 at snack) to a whole tab (1/2 at lunch, 1/4 at snack, final 1/4 with dinner) because I had been experiencing loud gurgling/hunger pangs late at night and she said some patients get that with mestinon because it's not lasting in your system long enough to make it to the next dose. Now I'm wondering if I've made my blood sugar issues worse. Now I'm starting to monitor my glucose levels at the behest of my GP, and today I finally got my glucosometer and had a concerning high reading two hours after my dinner and final mestinon dose-- 187 mg/kl (for reference, non-diabetics normal rage is < 140 after a meal.) My friend who is a phlebotomist told me this is a concerning number, and I should call my doctor first thing tomorrow. She also told me to take another reading an hour after my evening snack. I had some yogurt, and an hour later my reading was back at 115 mg/dl. My friend said she would be interested to see if I have a similar reading two hours after my last mestinon dose tomorrow. I'm honestly freaking out that Mestinon, which by all accounts has been a wonder drug for me, it actually makes my fatigue bearable, is sending me into concerning glucose levels. Otherwise I'm terrified I might be diabetic on top of my POTS and all of my dysautonomia issues, although I have only one of the risk factors for Type 2 diabetes. I have a healthy, low BMI, I don't drink soda or diet soda, I don't eat an excessive amount of sugary junk food, and I only have one grandparent who developed geriatric type 2 diabetes because of lifestyle factors. The only risk factor I have is the relatively inactive lifestyle I lead due to the fatigue and exercise intolerance from my POTS. If anyone could shed any light on this it would really help put my mind at ease. I'm a wreck right now. Thanks!

POTS symptoms also have a lot of overlap with panic attack symptoms, and they feed into each other and make each other worse. So when you get POTS symptoms that are concerning (chest pain, pounding heart) your brain goes "wait, what's happening? something's wrong" and it triggers anxiety which also has symptoms like shortness of breath, tingling sensation, sense of impending doom and feeling like you're going to die. And just to reassure you, you can't die from a panic attack; in fact it's extremely unlikely you'd even faint from one. Please don't misunderstand me, I'm not saying all you are experiencing is anxiety, but I know from having both POTS and Generalized Anxiety that going to therapy and being on anti-anxiety meds has been really helpful in knowing what symptoms are from my anxiety and which symptom are because of POTS. Knowing this difference helps me manage both. Hope this helps.

Hi everyone. A month ago I woke up with a general feeling of weakness in my right hand and a very strange sensation in the right pinky...it's not a numbness or a tingling, it just feels WEIRD, like it's got a rubber glove on it. The sensation radiates when pressure is applied to the ulnar nerve. The finger itself is also more extended when i spread my fingers out than my left pinky, and when i softly close my first, my right pink doesn't stay down as far as the other fingers. I saw my PCP and he said he thought I might have damaged my ulnar nerve by whacking my funny bone (ENTIRELY possible, I am very clumsy) and to monitor it for the next month and then if it was still going on to perhaps have an EMG/neuro exam. Well a month has passed and it mostly went away except for a few sporadic days like today when I'm experiencing the strange sensation and weakness. My neurologist is someone I see in Boston strictly for POTS and I live at the other end of the state so I have to see another local neurologist for this new fun thing. Has anyone else experienced this? I don't think it's POTS related but has anyone experienced this type of thing and then fond out it was related to POTS nerve issues? Any feedback you could give would be helpful. Thanks!

novocaine always makes me tachy. my dentist gives me carbocaine and it doesn't affect my heart rate.

yogini- thank you for your words or encouragement. i agree with you. i don't want to give her a letter that she could hold over me. we have never had a great relationship even prior to my POTS onset and she has shown a penchant for saying unkind things about her children's significant others, so I have no expectation that she will get any nicer. BF has agreed to speak with her before my next visit, and i said i can tell her definitively that beyond asking how i'm feeling, i won't be answering any more health questions myself when i visit next. tbh it is has been a tremendous relief to hear that he is willing to do so.

thank you for the responses. i've been with my boyfriend for almost seven years, and his mother has been...challenging for all of that time, even before i got sick. she is someone who requires a great deal of energy to be around even in the best of circumstances, but now that i am debilitated by POTS, my ability to handle it has dramatically dropped with time and through interactions with her. i do not expect her to change, but my kind of central thesis for this rant was that after almost four years of her treating me this way with my illness, i just don't have the wherewithal to handle her nonsense anymore. i don't have then energy. i can't find the spoons. i recognize that ultimately she WOULD like me to get well, but it's troubling since it's not for my own sake; it's so that her son will be with an able-bodied person again, so even when she sounds like she's expressing concern for my well-being, it always comes off as a thinly veiled "why is this whole getting better thing taking you so long and why aren't you doing more to speed up the process." statesof: yes, i've told her. she doesn't listen. and essentially i've accepted that i can't swim against the tide, but she asks me the same things over and over and over again. shan: thank you for your boundary suggestions. i feel like i can't get into the medical explanations anymore with her so i think "it just didn't" and "i can't explain that" will be very helpful.

Hey everyone, I know it's been a long time since I've posted anything, but now I feel like i need to rant about someone I simply don't have to the tools to deal with. So saddle up, this is going to be a long one. I have mentioned before on the forum that my longtime boyfriend's mother (hereafter I shall refer to as BFM) has been extremely difficult and less than supportive of me and my relationship with my boyfriend (who I'll refer to as BF) for years. It has caused me a great deal of distress and anguish for a long time, but since BF and I are long-distance, I only have to put up with her face to face one weekend every 8-12 weeks or so. But after last week, I feel like she has really pushed me over my edge. It's been several days and I am still so angry. Last weekend was one of our college friends' wedding an hour away from my BF's house, but about 3.5 from mine. So to avoid holiday weekend traffic, my mother wanted to drive me to meet my BF halfway as is our routine (as I am too fatigued to drive over two hours to his house on my own) on Thursday night then head to the hotel for the wedding on Saturday afternoon. This meant more time around BF's mom than I am used to, which is usually only Fri night-Sun afternoon. When BFM speaks to me, it is not a conversation. It is an interrogation. And her questions may seem harmless to her, they feel very intrusive to me. What meds am I on. What vitamins do I take. Why do I take B12 injections. Which doctors have I seen. Why haven't I seen more, BETTER doctors. Why am I not supposed to eat certain foods. It is as though she thinks I can't converse about anything else under the sun. I don't like to discuss my POTS or my health in this way, particularly with someone when it's not coming from a place of respect or concern. She acts as if I am not a fully-formed adult with thoughts, ideas, opinions, interests, hobbies, hopes, dreams...and since I don't have a job, she assumes all she can talk to me about is my health stuff. I am becoming exhausted just typing about this because it wears on my soul so heavily. Anyway, the first thing she said to me upon arrival at the house was "Why don't you wear full-leg pressure sleeves?" Keep in mind it was 90 degrees, ten o'clock at night, I'd just been traveling over two hours and I was huffing and puffing to bring in what light luggage I could carry. I explained that I don't need full legs because I only need the BP support in my lower extremities because that's where the blood pooling is. "Why." "Because blood only pools at my ankles." "Why." I admit at this point I just couldn't coherently respond. Next was a battle of where I was to sleep. I am always relegated to the guest room downstairs next to the kitchen, but I am always disturbed from sleep very early in the morning because it's right where everyone is getting up and getting ready. Instead of letting me stay in his sister's vacant room (she no longer lives at home) my BF suggested I take his bed and he would take the guest room. He had to run it by his mom first, who tried to convince me that downstairs was cooler for ten minutes, then closed with "But it doesn't matter to me, do what you gotta do." Then the power went out, so there were no fans, no light, and we weren't allowed to flush the toilets because they have well water. That's when everything when pear-shaped. I tried to sleep, but it was too hot, and BF's mattress was very hard and was hurting my hips (I have been having pain around my SI joints for months; still not sure why). on top of that, each time I tried to drift off to sleep, I would experience a massive jerk in my muscles. I went downstairs and switched beds with BF because the guest bed is less firm, but the jerking continued. Around 5 AM i started to feel nauseous and by 7 AM i was having to use the bathroom every half hour. At 10:30 AM BF's mom asked why I was up so much and I said i thought I had a stomach bug. She asked me why I was making myself a hydration drink, and i told her because I needed to replenish the electrolytes I was losing. She told me you're not supposed to drink when you have a stomach bug, that she's "raised five children that way, I was raised that way, and any doctor will tell you that's the truth." In my sick, overheated and sleep-deprived state, I just took my nuun drink and went back to bed. I had already spoken to my PCP's nurse who absolutely agreed I should push fluids. I wasn't able to get any more sleep. For whatever reason, BF's family didn't feel like installing their AC units, so I spent the rest of the day in a 90 degree house with the windows wide open. When I went to bed Fri night, I figured I would be so tired I'd fall right to sleep. However, the jerks were worse, and I was beginning to get widespread muscle twitches. I spent another sleepless and nauseous night feeling as though I was losing my mind from sleep deprivation and frustration, convincing myself that these twitches were my own anxiety sabotaging myself. I wept, feeling that I could never attend my friend's wedding after two nights without sleep. My body simply couldn't cope even before my POTS diagnosis. However I must have been running on adrenaline, because while I was aching, exhausted, messing up my words when I talked and running on a very short fuse, BF and I actually made it down to the hotel Saturday afternoon after spending all of Saturday morning and most of the day in the 90 degree heat. We met up with my brother and his fiancee who happened to be in the area for dinner, and everything seemed to be alright. I was sure I would be so tired I would fall asleep immediately in the well air-conditioned hotel room in a plush, comfortable king sized bed. As soon as I tried to start going to sleep I knew I was in trouble. My body was twitching uncontrollably. Although I was exhausted, my legs didn't want to stop moving. I tossed and turned and got up to pee but the twitching turned to tremors and by 3 AM i told BF i needed to see a doctor. We drove to a nearby ER where it turned out I was extremely dehydrated with a significant electrolyte imbalance. To their credit, it was the most wonderful ER experience I've ever had. They gave me two liters of IV fluid and some Valium which helped with the twitching, and by 9 AM we were headed back to the hotel for a quick nap before we had to get up and get ready for the ceremony. I was able to get an hour's sleep thank goodness. I was also able to attended both the ceremony (which was a full Catholic mass complete with please be seated/please rise every 2 minutes) and the reception who knows how but I did it. My body ached, my nerves were overwrought, but somehow by the grace of God we got through it and I mercifully was able to sleep Sunday night. We decided not to mention the ER trip to BFM upon our return to his house the next day. The first thing BFM said to me when I burst through the door desperate to get to the bathroom after the hour drive (obviously I was trying to remain well hydrated) was "you need to learn to train your bladder" because that's what her daughter's doctor told her to do. I didn't even respond because obviously I'm a different person than her daughter with different medical issues but there's no use telling BFM that. She then proceeded to grill me about how I was feeling, the state of my hip pain, why I thought I had hip pain (for the second time that weekend btw) and went on about how she wished I could take something to make my BP higher. I've already told her countless times there's nothing else to try since midodrine gave me a kidney infection and florinef is a no-go. She then asked me, "If you had something that made your BP higher, would you be all better?" My exhausted and demoralized self could only manage to sigh, "NO." This is something I have been dealing with for years. While my BF is exceptionally supportive, even he has his limits, and he is unable or unwilling to ask his mother to back. the. heck. off. Days and days later I'm still stewing in my unhappiness over how his mother treats me and I just don't know how to cope with it anymore. This is someone who is likely going to be in my life forever, yet I don't know how to cope with her nonsense after this past weekend. if you google "What not to say to a person with a chronic illness" every list you'll find she has said everything on it to me. I don't know what to do, I'm at my wit's end with this woman. I realize you can't change a person's nature which I supposed is one reason BF doesn't feel like saying something to her will do any good, but how do you get someone with serious boundary issues to back off? It's really affecting my anxiety. Any suggestions would be helpful.

i have done it several times over the past year or so. I do not notice it helping with fatigue at all, but I absolutely notice that it helps my gastroparesis, which makes me believe it is helping stimulate my autonomic nervous system and stimulating the vagus nerve, which is good!

finding the holidays particularly challenging this year. hoping everyone else is getting on okay.

birth control actually is a must for me. not only does it actually give me a 5-10 point boost in my BP, but it keeps me from having really awful heavy periods that make my BP even lower and drags me down into anemia...every. single. month.

thanks for the replies! Sarah- I do not have high blood pressure, in fact my baseline is extremely low. But I am on Metoprolol to keep my tachycardia in check so I certainly don't want to be taking anything that is going to mess with its effectiveness, so thanks for calling it to my attention!

Hi guys, my frequent urination is at a point where it's seriously interfering with my quality of life (ha. in addition to POTS in general affecting my quality of life...) and my urologist suggested myrbetriq. i know it's still relatively new to the market, but it's the only pharmaceutical he could recommend for overactive bladder due to dysautonomia that wouldn't have serious contraindications relating to my delayed gastric emptying. as with any new medication, i am extremely weary given my extreme sensitivity and knack for catching all sorts of side effects so i wanted to do some research before considering going on it (plus he was hesitant to writer me a prescription before i double-checked with my neurologist about taking it). trouble is, because it's new, there's not much out there to read about the drug and POTS. has anyone on here tried it? if so, what was your experience with it? did you find that the benefits outweighed the side effects/risks? any feedback would be much appreciated. i hope everyone has enough spoons today. (spoon theory explained here for those who don't get the reference!) http://thespoontheory.tumblr.com/post/44757754831/faq

i take licorice root extract tablets i buy at whole foods or other health food stores. definitely notice a boost in my bp. tried midodrine and it gave me a kidney infection. never again.

update on this topic-- since no doctor ever could explain to me why i had this weird morphine sensitivity, i was given another narcotic painkiller when i had a minor surgery in march to remove my sternal wires. i actually woke up briefly after being put under anesthesia when they gave me the opioid and i grabbed my neck because that's where i was feeling the pain. last month i started seeing a new psychiatrist who THANK GOODNESS was able to give me an explanation for my reaction to opioids...essentially people like me because of genetic reasons don't metabolize narcotics very well, and i have what he called "lazy enzymes" in my liver that both make me react badly to the administration of them, and also not really get any results from painkillers. not only did morphine give me jolts of pain-- it didn't do anything to alleviate my surgical pain. because it is a genetic trait, i talked to my brother and he told me pain meds don't really work on him either. the only drug i've been given by a hospital intravenously that has helped my pain has been fentanyl, which is fast acting but not at all long lasting. i was so happy when my new doctor explained this to me. to be honest, i'm so used to the standard *shrug* "well i just don't know what to tell you..." from the medical world that whenever i encounter a doctor who's really on his or her game i want to hug them and shout "you have no idea how much i appreciate you!!!!!" so perhaps POTS is not the cause after all, although i'm sure it doesn't help.

I've become hypersensitive to many things with my onset of POTS, sounds, light, smells in general, but lately I've been really sensitive to the smell of certain foods cooking. Whenever someone in my house cooks garlic, onion, bacon, sausage, or makes coffee it super bothers me and it feels like the aromas are stifling me, like all I'm breathing in is the wafting odor. I'm not one of those people who can't be around perfume and scented candles and stuff but for some reason these really pungent foods being cooked have been driving me crazy lately. Anyone else experience this?

When you go out in the heat, your blood vessels dilate and your blood pressure drops, which is very triggering for those of us with POTS which means we're much more susceptible to heat exhaustion. Personally i can't tolerate any heat and my cardiologist told me if it's over 85 degrees, don't even go outside. I'm pretty sure living in a very hot place for a summer (DC) is what made my POTS flare up so much that I went from working to incapable of working I don't want to worry you I just want you to give you a heads up that's it's possible.

also perhaps consider eating 5 small meals instead of 3 large ones since brain fog can get much worse after a big meal since the blood rushes to your stomach. also if you're not using pressure cuffs/stockings i HIGHLY recommend them.

hello and welcome! based on my own experience i would say you are doing the right thing trying to investigate this despite what seems like discouragement from others. i was diagnosed with POTS more than five years ago and was able to be high functioning, finish college, get a job and work the same job for 2 years (which required me to be on my feet all day.) i did have POTS symptoms, but i wasn't debilitated by it. i spent years being told what i was experiencing was anxiety, and it was really vindicating to be told that it was actually dysautonomia. three years ago i moved to the mid-atlantic for a job opportunity over the summer and in a matter of weeks i was in a full-blown POTS flare, had to move back into my mom's house and have been unable to work or function on a high level ever since. i often wonder if i had had all the information and known the extent of how serious the illness could get if i would have made the same choice to move to a hotter climate because i didn't realize until i was in the midst of it that i was making myself worse. you may or may not have POTS, and if perhaps you do have POTS you might have a really really mild case, but i would definitely recommend finding a doctor that will take you seriously so you can learn as much about what's going on with your body as possible so you can keep it in the best condition it can possibly be in.

i'm on an aspirin regiment following heart surgery 2+ years ago. it's never caused me any POTS problems.

whoa. i'm really glad my gut told me to stay away from that when it first came out and all my doctors were pushing it. still got POTS, but maybe I would have been debilitated years earlier if i'd gone ahead with the vaccine.

So sorry for your loss. Sending positive thoughts your way.

i've had a tension headache last for more than three weeks because my sternal wires were making it impossible to stretch and move certain muscles in my neck and shoulders and when you don't use something it's gets stiff and tense. My mother had a tension headache for almost 2 years over 20 years ago before they figured out what it was. my doctor referred me to a physical therapist because he says any tension headache that is lasting for any amount of time usually means there are some muscle knots and spasms in the neck that need to be manually worked out and can't just be fixed with painkillers or muscle relaxers. as far as home remedies go-- stretch, exercise, YOGA. i've been finding these yoga stretches helpful lately: https://www.youtube.com/watch?v=CaPRFm3EZWY and https://www.youtube.com/watch?v=x6MwJhCA_x4&list=WL&index=30 My tension headache has come back since i can't move the muscles since my surgery removing my my sternal wires. good luck!

From what I have read, cancer due to not shedding uterine lining is called endometrial hyperlasia and it occurs when there is an EXCESS of estrogen without progesterone in the body in women who are menopausal or perimenopausal. The excess of estrogen causes the endometrium to continue to grow despite the lack of menstruation and could lead to cancer. THAT SAID, unless your doctor has done tests to conclude that you have a hormonal imbalance and that you are producing more estrogen than normal, I do not think that at 17 you should be too concerned about uterine cancer from lack of periods. from what i understand, endometrial hyperplasia is the only reason not shedding uterine lining would cause cancer. Women don't get periods for many reasons...often athletes will stop getting periods or they stop due to being underweight. Often amenorrhea (lack of periods in a woman of child-bearing years) happens when a women is breastfeeding, or is on an IUD or other hormonal form of contraception, and there doesn't seem to be any known evidence to suggest that simply not getting a period alone can cause cancer. here is a link to info about the condition http://www.acog.org/Patients/FAQs/Endometrial-Hyperplasia You are right to be seeing your doctor and to be asking these questions, but perhaps ask your doctor to refer you to an endocrinologist if he or she suspects a hormonal imbalance. an endocrinologist will be more familiar with causes of hormonal imbalances and tests to determine them. have you had any tests run? personally i have been on birth control for ten years and am going through my own bc drama. i am currently off the pill because it started giving me horrendous acne and possibly causing GI bleeding, but in ten years, once i found the right pill for me (there are MANY MANY different kinds and it can take a while to find the one that works for you) i haven't had any POTS-related problems with it. in fact, since i've been off the pill my BP has dipped even lower . it is nice to have my body on it's own hormonal rhythms, however, i have needed to be on the pill because my periods are really heavy and i'm prone to anemia. by all means if you're not comfortable going on hormonal contraception it's totally up to you to tell your doctor how you feel. but i agree with MomToGiuliana that the cause of your 8 months of no period should be investigated rather than someone just throwing pills at you on a hunch.

i have a pretty sensitive GI tract and some gastroparesis as well, and have had no issues with NUUN causing stomach upset. keep in mind that polyethelene glycol is the main active ingredient in Miralax...and therefore acts as a hypersomotic laxative. essentially it makes the intestines hold more water and helps to move things along, so to speak. that said, yes NUUN tends to make me more "regular" but hasn't caused any problems, but everyone is different. @batik: as far as NUUN being "controversial" i guess it is the PEG in it. the reason PEG is controversial is that there is unclear evidence and data about it's toxicity. obviously if it was immediately harmful to one's health it would never get past the USDA and the FDA because PEG is generally accepted to be safe, that's why it's found in things like Miralax. Essentially it's like any other concerning substance...BPA in canned goods, dyes used for food coloring...we don't know the long term affects of taking it and it may or may not have some toxicity. it's just one of those things you have to weigh the benefits and risks over. for me personally, NUUN makes enough difference in how i feel and my ability to function that i drink it anyway. it was recommended to me by my neurologist and i told my integrative medicine doctor about it. he said he wished it didnt have PEG in it but i believe if he was really concerned about me taking it he would advise me to try something else; he acknowledges that most things in the health realm, treatments and meds are not without risks and it's a risk/benefit analysis. in regards to the artificial sweeteners in NUUN, i don't know anything about which one(s?) it contains, i just know it doesn't have aspartame, which i choose not to consume. so choosing not to take it because of sweeteners and PEG is a legit choice, but so is taking it if it helps.

I'm a big fan of Nuun in terms of how it makes me feel..i have a post about it my experience with it here, but i'm also a big fan of SmartWater. I know it seems like a lot to pay for bottled water but it has added electrolytes and it's the only thing my body will actually retain. I'd say it's equal if not better than gatorade and powerade in terms of it's hydration for my body, without the sugars and dyes.