imapumpkin

I'm always thrilled when my BP is that high! 120/80 is the medical ideal, but there's a wide range that's considered "normal"... but like Jackie said, everyone is different. My doc's office said it's more how you feel than what your pressure is.

the light sensitivity is probably due to overly dilated pupils. Since pupil dilation is regulated by the autonomic nervous system and people with POTS can't regulate our vitals, a lot of us are photosensitive. I can't think of a connection between low blood pressure and light sensitivity, it sounds like just another pots symptom.

hang in there! sending good vibes your way. i know it seems really hard but try to be patient...things will get better.

Thanks for the responses! This woman has some serious boundary issues that I need to learn how to cope with because I don't think she's going to change anytime soon... and from what I understand, she is constantly grilling my boyfriend about my health situation as well and anything he says goes in one ear and out the other. Apparently she is convinced that there is a doctor out there who holds a miracle cure out there and we just don't know about it. He lives with his parents because he has tens of thousands of dollars in student loans and needs to save up to get out from under his crushing debt before he can move out, so he has to stay simpatico with his mother while under her roof. Twice he has faught with and then stopped speaking to her for weeks on end because of things she has said about me/my health/our relationship, but the reason he didn't speak up is because he just kind of shut down. He's so used to her being obnoxious. We've talked about it and he gets frustrated because no matter what he does or says, she doesn't stop, and so even if he did tell her to stop, she wouldn't listen. I'm not just making excuses for him...sometimes I wish he would try more to respect boundaries, but his general attitude is, this is just how she is, how she's always been and there's nothing he can do to change it. In general though, he is one of the two most supportive people in my life, the other being my mother. He is caring and understanding of my limitations, has been willing to do all of the traveling to come see me since I can't drive to see me, gone with me to important doctors appointments, and we have discussed a future together before, and after I got sick. His immediate response last year when I told him I might need heart surgery was "I will go with you."Two weeks before my surgery he surprised me arranged for my 3 college roommates/close friends (who all live in other states) to come visit me so I could see them before the surgery. He's a keeper and I don't plan on letting his mother taint my relationship, even thjough she does stress me out and make me upset. I think I might have a situation like kayjay's where he is commited to me, but his dysfunctional family isn't his fault and he will continue to be close with them. It's frustrating that so many people can't and won't understand what its like being sick and I read and enjoyed The Spoon Theory. It's just a shame that some people will never know unless they are sick themselves. Sometimes I wish people would read up on it to better understand it rather than ask ignorant questions, but since my own brother knows absolutely nothing about POTS even though I sent him a link to DINET that he never bothered to read, it might be asking too much for my bf's mother. Like I said, I'll answer questions about POTS but not when I'm being questioned by someone who has boundary issues and asks the questions in such an accusatory way.

Hello there. A few months ago I posted about how the mother of my boyfriend of 4 years was making disparaging comments about me as a potential future daughter-in-law because I have a chronic illness. Then she was questioning my ability to give her son children someday. I thought, after spending an extended visit with her over the summer, that she and i had turned a corner and she wouldnt' be so judgemental and interfering, but alas...Hurricane potential-MIL has struck again. Let me preface this by saying I have been doing much better lately, the Fall temperatures have been a huge help boosting my BP and generally making my body feel better. I'm taking licorice root extract which is also helping my BP, and taking vitamin b12 shots every few days for my fatigue. I drove for the first time on a highway in over a year last week. I was able to go out and go apple picking this past weekend, something I physically couldn't do a year ago. I am still plagued by pretty bad fatigue in the mornings, and i get waves of exhaustion that hit at random times, but all in all I'd like to think things are steadily improving for me. This evening while I was skyping with my boyfriend (we are long-distance)...his mother entered the room and proceeded to punch my day in the face. She started out by telling me I needed to "be happier" and "find more things to be happy about" based on a facebook status i posted today that jokingly made fun of the bad drivers in my state. (she should be glad i am driving at all since so often brain fog kept me off the roads over the summer). She then proceeded to grill me about my POTS. During this interrogation which included "What exactly is your prognosis?"..."Would you ever consider getting a second opinion from a doctor who could actually help you?" (I see a top POTS specialist, and she does help me...there just isn't a cure or a magical pill to make it all go away and MIL doesn't get that)..."What would happen if you got up and went out and did things even when you're feeling bad? Can't you push through it and kind of build up your endurance?" ( MIL translation: You should tough it out and be on your feet even if you're feeling bad, I do! play through the pain!!!) and "explain to me about this hours of the day thing..." (MIL would like to know why I sleep through the mornings and I have to explain to her what my neurologist told me about how throughout the day, human BP is the lowest between 12 am and 10 am so mornings are when POTS patients feel worst. This is a concept she has a very hard time with and it is not first time I have tried to explain it to her.) As for her wanting me to "push through it" and "build up my endurance" and "what would happen if you at least tried to play through the pain" I tried to explain that it's not like a normal person trying to get in shape where they feel bad the day after they first exercise. I literally said to her "my sympathetic and parasympathetic nervous systems are BROKEN. They cannot regulate themselves." (To which she asked if there was anything I could "take" to fix that). I had to explain that my organs aren't getting enough oxygen-rich blood because of low blood volume and pressure and therefore I cannot just "play through the pain" because the energy is just not there. I am able to go for walks each day at a brisk pace, do a full grocery-run on a good day. I thought I was doing better. MIL disagrees. I had a pretty decent day today and was in pretty good mood and I just felt like she swooped in and dumped all over it. I understand that people who don't have illnesses can't really understand what it's like but, come on-- one doesn't need to be sick to have compassion. This whole conversation felt so accusatorily like "you're not trying hard enough to get better" that it's making me sick. Of course I'm trying. If you had asked me last year if I could inject myself with a needle to get vitamin b12 i would have told you NO WAY JOSE but I do now. I'm sorry i'm not recovering quickly enough for this woman but sakes alive, I assure you I far more eager than she is for my health to return. I don't know how to deal with people like her...specifically her. She just makes me feel really judged on-the-spot for something i have no control over and would dearly love to be rid of. I am at a loss as to what I could possibly say to help her understand. I am very happy to explain to anyone who asks about my POTS, but not if they're going to turn it around and make it seem like i'm not trying hard enough to be better. Sorry. End of rant. Thanks. oh, btw, i thought of the cheesiest POTS joke: Do you think POTS wakes up every morning depressed because it looks in the mirror and thinks, "nobody UNDERSTANDS ME!" yeah, that was the worst.....

Feeling pretty frustrated right now because all the symptoms of anemia are also the exact stuff i experience with my POTS like FatiguePale skin (not even pots-related either, i'm naturally very fair)A fast or irregular heartbeatShortness of breathChest painDizzinessCognitive problemsCold hands and feetHeadache(courtesy of mayoclinic.com) I'm worried I am anemic as I was told based on a July blood test that i was "borderline anemic" even though i take 28 mg of Iron Glycinate every day. So that's borderline anemic WHILE taking iron supplements. I plan to call my PCP and look into this tomorrow and I'm surprised that the doc who told me i was borderline anemic didn't recommend that i increase my iron intake. I stopped getting my period altogether this summer and while my gynecologist's office says that's pretty typical in someone who's been on the pill for several years like me, I'm worried that it might also be my body going "No way Jose. You're hypovelimc from POTS, you're iron is low, you dehydrate easily, I'm not doing anything else to make you lose blood volume/fluids." I get really frustrated when i see a symptom list like this, (and let's be serious, there are LOTS of things that have these symptoms) because I never know whether something else might be going wrong or if this is just more of the same from my POTS. UGGHHSOFRUSTRATED.

salt intake (thermotabs) doesn't seem to help my frequent urination at all. i've pretty much resigned myself to peeing ALL the time, whether i've had a lot to drink or a little.

to most people i look normal...people who know me well will notice i look tired...my own mother likes to encourage me to "get a little color" so i've started wearing a lot more makeup. and TOTAL STRANGERS comment on how pale i look. i AM pale, but i am extremely fair-skinned to begin with thanks to my really English/German genes and the fact that my skin doesn't tan. since my POTS flared in summer 2012 i have barely had any exposure to the sun so i am especially pale. either way i get really irriated by people making comments about personal appearances. i'd never think to comment on someones physical traits unless it was to compliment them. still i get lots of "do you EVER go out in the sun?" and an old woman in a hair salon told me i look "almost translucent." in retrospect i wish i'd given her a snarky answers and made her uncomfortable about how i have an chronic health condition but i was so dumbstruck at being addressed by a stranger commenting on my complexion that i was speechless.

25 almost 26.

I can only speak for myself, but I don't find gatorade helpful at all, not even in the summer, and i dunno if it would be helpful for fatigue. there's so much sugar and artificial colors that's upsetting to my stomach and makes me have to me use the bathroom a ton more than water with electrolytes in it. I recommend smartwater for hydration but I dunno what to tell you about finding fatigue relief from non-IV fluids.

i have low blood pressure to begin with so i'm on a very low dose of a BB. maybe your doctor will want you to start small and once you're able to be up and moving around your bp may raise naturally.

sue-- i thought of that too, that maybe i was taking them too often and when i see the dr again (not til the end of october he's booked solid til then) i'll ask if it's something i could inject once a week or even go there to receive a deep muscular injection as opposed to the little needles i was using but not nearly as often. I'm pretty sure the syringes only had b12 and no preservatives as the box said discard after 28 days and they were kept in the fridge until use.

I was taking methylcobalamin which i injected into my outer thigh. No more though, developed an allergic reaction to the injections

So several days ago I posted about how much my injections of vitamin B12 were changing my life, drastically improving my energy level and combating my fatigue. The very next day after posting this (serves me right) I developed a rash at my injection site right after taking my shot. I called the doctor's office and the nurse I spoke with told me I had developed an allergy to the injections and I would need to stop taking them altogether. She said it happens to about 10% of patients taking the shots and that like me, most of them took several doses before showing any signs of a reaction. I took my last shot last Monday and had a few days riding out the last of it in my system. Now it is completely gone and I feel like I've once again hit a wall. I cried when I found out I couldn't take my shots anymore. Loud, hysterical, sobs of despair because for 2 whole weeks I felt almost normal. I felt like I was getting my life back. I felt GOOD. Now that I know feeling good is possible it seems so cruel that my apparently miracle treatment be taken away from me. My doctor told the nurse he now wants me to try the sublingual B12 which I am perfectly happy (and frankly very eager) to do, but didn't tell me what dosage to try so I must find out. But I've heard conflicting things about how effective the sublingual version is compared with the injections. Does anyone have experience with the under-the-tongue version? Has anyone tried both the injection and the sublingual and compared the two? I am hoping so hard that the sublingual ones are even partly as effective as my shots. Wondering if anyone has any encouraging experiences with them.

I take thermotabs (coated) with a meal and a full glass of water and mostly have no trouble other than feeling a little bloating in the stomach.

i take thermotabs...i have a sensitive stomach and haven't had any trouble with it, just feel full beacuse you have to take each tab with full glass of water.

So almost 3 weeks ago I went to a wellness center near me and saw a doctor who does integrated medicine. It was a wonderful experience...the doctor knew what POTS is, has treated POTS patients before and wants to help treat all aspects of my condition. The day before I went to the wellness center i posted here about how i was too anxious to try midodrine and thanks to this doctor, i haven't had to yet! Essentially the doctor said a reason for so much fatigue and brain fog as well as exercise intolerance is the low blood volume meaning that blood is not perfusing to the vital organs (brain, obviously, for the brain fog) and the muscles and heart etc, so no wonder exercise is that much harder for us. (Which makes me wonder how exercise is supposed to a treatment when it's difficult to exercise without enough blood flow?)...so he made the number one priority getting my blood pressure up. He put me on salt tabs (something my POTS doctor only mentioned once but never prescribed) and capsules of licorice root extract which has made a marked difference in my blood pressure, although i don't use it much because it gives me stomach pains. The best thing this doctor prescribed for me has made a HUGE difference in my life in a short time and with my fatigue is vitamin b12 injections. Unfortunately it's not covered by insurance but it's worth the highish price. The filled syringes get sent directly to my house, and i can do the injection myself, really easily, hardly any pain...14 days in a row then 1 every 3 days for the rest of the month. I guess this is a common treatment for Chronic Fatigue Syndrome but since POTS and CFS overlap so much he says he uses it to treat POTS patients too. I have noticed a HUGE difference in my energy level and general well-being since starting the shots. I still feel fatigued at certain points during the day... I still have to sleep well into the day but after my shot i feel almost like my old self again. It's really been a godsend. My body just feels better, I don't know how else to put it. Also I'm much happier taking a more natural treatment route than using pharmaceuticals. I have no problems with medications, but if i can solve something without worrying about drugs with side effects i would much prefer it. Also this doctor thinks he can eventually get my off my beta blocker. I'm on metoprolol and it really helps my tachycardia but he says in the long run beta blockers won't be helpful with dysautonomia so if he can find an alternative i'm happy to look into it. I just wanted to share my experience with the group. Who knows, maybe this treatment could help anyone else, and I've had a positive experience so far.

My wellness doctor just prescribed me with capsules of licorice root extract and I noticed an IMMEDIATE boost in blood pressure. I'd prefer to be on the licorice and wait to try midodrine... Only problem is for some reason it gives me bad stomach pains, especially when i take it while on my birth control.

just saw this too! if it does turn out to be dysautonomia, i hope some good will come out of it and bring awareness to the condition.

Last week I had my latest appointment with my neuro POTS specialist. Because my biggest symptom continues to be fatigue, she gave me a prescription for Midodrine...the lowest dosage there is. The problem is I've read and heard so many stories about bad reactions to Midodrine and I am very chemically sensitive (as many POTS people are) so I'm having serious SERIOUS anxiety about starting the medication. My appointment was last Wednesday and I still haven't started it yet...I'm anxious about taking it when I'm home alone in case I have a bad reaction. I don't know what to do. I'm going to talk to my therapist about it later this week but for now I'm frustrated because yes, I would like to try something that could help me feel better and my doctor says it could improve my fatigue...but at the same time I've had such a bad experience with sensitivities to medicine that I'm freaking out about trying this one. Has anyone else experienced anything like this?

It's so weird, I would never say I don't get good sleep. I'm just a light sleeper in terms of sensitivity to noise. Well, I guess the good news just keeps on coming...

My symptoms get much better at night. Apparently the natural 24 hour daily cycle of blood pressure plateaus in the evenings and is at it's lowest before 12 noon and it's highest at night. It makes sense that symptoms might get better at night...higher blood pressure, lower barometric pressure, typically cooler temperatures with the sun down. Feeling better at night is why I stay up so late, I want to actually be awake for the hours that I feel okay.

So I had my latest trip to the neurologist this week with my POTS specialist and she mentioned something interesting that she said they had just completed a sleep study about POTS. By far my worst symptom is fatigue so we were asking the doctor what exactly causes the fatigue if tachycardia and blood pressure are mostly under control. She said that many dysautonomia patients don't get the quality sleep they should be thus waking up feeling as though they've gotten little rest. She said this is because many dysautonomia patients get what she's called "fragmented sleep", meaning even if they reach REM sleep, it is often interrupted for whatever reason, so it's not as restful because the REM sleep keeps getting cut short. I just thought I would pass along this new (ish) information. She said getting full restful sleep might be helped with a sleep aid like melatonin. It's weird that she thinks I might be someone who has this fragmented sleep because I literally feel like I vividly dream all night long and the only time my dreams are interrupted are when I am awakened.

I'm also hypersensitive to stimuli like sound, commotion, crowded places. I take a low dose SSRI and a low dose benzo but can still get anxious. I have to say that guided relaxation meditation makes a HUGE difference with my anxiety. I try to do it daily and have really noticed an improvement in my anxiety level. There are lots of good videos on Youtube that are wonderful for relaxation and anxiety relief (I could send you links some that are very helpful to me if you'd like) but when I was facing heart surgery a few months ago and I was in a panic, what helped stop me from completely melting down with fear was relaxation meditation. Just a suggestion!

CANNOT tolerate Novocaine. I got one shot of it two years ago and i thought my heart was gonna shoot out my ribcage and run out the door...and really didn't do much numbing. Carbocaine and Lidocaine are fine and I don't get tachycardia from either..One shot of carbocaine does the trick at the dentist