masumeh

Actually, before I read the "48 bpm" thing, I was thinking: That's brady. Yeah, it happens to me also. Brady, for me at least, comes on stronger when laying down. So when I wake up with it, it's hard to get up but important to try to sit. Maybe you need to sleep with your head elevated? The "pounding" is what brady usually feels like for me when it gets really low. Below 40, I'll be unconscious for several hours. THe pounding is horrible, and starts around 60, 55. Very tiring. Hope you get some help with that. Did you talk to your cardio about brady? Mine lowered my Midodrine dose in order to kick the brady, and it worked.

let me try to remember your categories (having lots of memory problems these days)...umm nausea: yes, me too, but not all the time. Try ginger (fresh, smell it before eating), vinegar (a tablespoon before or after eating, or both), small snacking, high salt products. V8 juice and Gatoraid help rehydrate, and that helps get the nausea a little down. Time of day can make a difference too...I'm most nauseated in early morning and late night. dizziness: yes, not always, but used to be always (first year of the disease). Flare-ups, always agian. On better-ish days, it's only when I first stand up. muscle spasms: yes, especially during certain kinds of flare-ups. Try to increase your potassium intake (V8 juice is good for that again). But honestly, I think sometimes the disease just takes over and no amount of suppliments can overcome it. Hope you find answers soon, and a treatment that helps.

Yeah, echoing again, but the ice craving--anemia. Do you get urges to eat paint too? I'm serious. This was mentioned in a nutrition course I took once upon a time. Maybe you should get a CBC to check it. It could also just be POTS oddities with temp regulation.

that was a nice comment, "earned your degree the hard way". She sounds like a considerate person. Hope you and your husband have healthy days ahead.

firstly, welcom to the forum. I hope you find the support and answers you need here. Sounds like you are getting some of the same lip from doctors that many of us have experienced (PA instead of fainting from tachy is sooo inexusably commonplace from doctors who aren't really familiar with POTS). I've had POTS for six years, and encountered many, many "doubters" among the medical community in the US and abroad. It's so incredibly annoying to be invalidated like that. I actually had one cardiologist recently blame all my health problems on low wieght, low bp, resulting (as he claimed) from anorexia. I'm not underwieght, don't have low bp, and eat just fine when I'm not nauseated by POTS. Anyway, hang in there! And for sure try to connect with a doctor who is very experienced with POTS. Even panic attacks and anxiety symptoms can be part of the disorder because of throwing the hormones off, especially in hyperadregenic type POTS. Some meds and also the infections they are prescribed to treat can antagonize POTS symptoms, provoke flare-ups, etc. I recall a forum thread about antibiotics, in which some POTSers said they feel better on them and others said worse. So I guess it depends on your manifestation of the disease. We're all a bit different.

just echoing, but anaphylaxis would be lower bp, not 135/80 as mentioned Great that you were able to do so much though...go you Summer is a temptation for outdoor activities that just sometimes come back to haunt us I guess.

This discussion is really interesting...many different perspectives exchanged. I recall a similar thread some time ago, maybe like two years ago or so. Anybody know what I'm talking about? Maybe I'll search it and post it in another reply. OK...where to find people you'd probably love...I think your interests are a good place to start. If it's religious gatherings, intellectual gatherings, sports (even spectator), crafts, helping others type centers...places and groups that share your values and ideals will probably offer some contacts (who might have other contacts and friends to recommend). Many people also find partners in brothers of friends, grocery stores, workplace relationships, friends of friends. Any relationship in any scene increases your connections and possible romantic contacts. I never dated, I have to warn you. But I've been married for six years, and I had about 170 proposals before my husband and I were engaged (age 20). I knew people and people knew people, and lots of people I guess knew them....we were a large religious community, and there is no such thing as "dating" in Islam, I mean the guy proposes (or the girl proposes) and then they sit and talk about themselves more. So like, there's a strong sense of commitment and seriousness from day 1. Both parties are interested in marriage, not just fun. Both parties want to know, as concisely as possible, how compatable they are for each other. I never spoke to anyone who proposed, except the one I married. So, I don't even know most of the other ones' names (they usually propose through intermediaries such as teachers, pastors, father or brother, "uncle" type family friends, etc). I know most of you have totally different experiences. But I know that it's important that the relationship is always about both of you, and not just you and surely not just your disease (which is not WHO you really are although it is a part of your life). Relationships, any kind of relationship, leads to more relationships and more people knowing you. That is good, when you are looking for a husband or wife. Just make as many friends and associations as you can. Mr. Right is in there somewhere.

both POTS and OH are probably incomplete diagnosis for your daughter's case. You really need to take her to a neurologist, and probably get an MRI to see what is going on in her neck and head to cause the pain at the base of the skull. Pressure on the nerves in the neck can cause all the symptoms you described. Maybe she is having a correctable problem. Let's hope. Many of us POTSers have damage in the nerves of that area (autonomic nerves stemming off the cerebral spinal column), resulting from a variety of causes such as viral infection, whip lash accidents, congenital malformations, etc. It cannot be erased, can actually become worse, and only partially might heal over a four year period. But pressure on those nerves, as might be your daughter's case, can be relieved. Pressure is not permenant. I hope you find answers and help soon!

Ditto to all other answers...basically don't worry...120/80 is perfect bp...midodrine shouldn't cause supine hypertension in POTSers. For the fact that you (or someone else, I don't recall) mentioned that your bp falls after standing, that can be from the POTS, yes. It can also be NCS (neurocardiogenic syncope), or a combination of both. In normal people (ppl without POTS), it would indicate dehydration. Normal people's bp drops while laying down and rises somewhat with activity. But POTSers blood flow is messed up, so bp might drop upon standing instead of rise a bit like normal ppl. I was really frightened of sleeping on MIdodrine in the beginning because of the pharmacudical warning. But my doc and experience calmed me down, so I used to take it and then nap as much as I liked or needed to comfortably.

Yes, I am currently taking Midodrine. I was also prescribed Florinef, but could not tolerate it at all. Both actually have side-effects, and my tolerance of Midodrine has been shaky, but decreasing the dose helped. I hope you find a med that works to alleviate your symptoms.

Hi, I'm not there right now, but my dad will be making a trip to his condo in Myrtle Beach in a week or so. I'll let you know (if my brain fog allows me to remember)

Exercise is important for POTS patients, although many of us are exercise intolerant. For those who can exercise, it helps alleviate POTS symptoms by conditioning the muscle tone of leg muscles important for venus return (getting blood to move against gravity in its travel back to the heart after delivering nutrients and oxygen to the tissues). Weaker muscles means worse POTS symptoms for most people. As for how exercise affects other systems and functions in the body, I don't know. But it makes sense that our lungs and heart etc need vascular toning up just as much as a regular person. Good question.

Midodrine is a vasopressor, meaning it acts on the blood vessels to constrict them, squeeze them so that blood does not leak out abnormally and pool in the lower legs the way it does for many POTS patients. Laxity or looseness in the blood vessels is a problem with some POTSers. So vasopressors work to keep the blood flowing to the brain by restricting the leakage into the legs. Midodrine was developed for Parkinson's patients because they experience the same laxity. Florinef, on the other hand, was developed for Addison's patients, who suffer from endocrine disorder that results in salt wasting (meaning, their bodies flush salt out with urine, leaving the person's blood volume low because H2O goes with the salt). Florinef is often used in conjunction with salt increase recommendations for POTSers with low blood pressure, low blood volume, who complain of urinating frequently (all signs that salt wasting is causing dehydration and low blood pressure). However, Florinef is a steroid, so it has a lot of potential side effects including psychosis. Some people tolerate Midodrine, others do not. Some tolerate Florinef, others do not. Usually, Midodrine is the first line of defense for POTS, and if it is not enough the specialist with move to add Florinef.

I go on and off Midodrine (which is the only med I was able to tolerate). I know that some periods of my life, I could not have functioned without the medication (like final exams during college). But there are also times when my life activities don't demand much from me, and I can go along without the meds, and do because I just think that too much medicine too long will create side effects from long term use. But then, usually after 6 months, I start to get memory problems (from low blood flow to the brain). And then I go back to the meds, go through adjusting again, slow recovery in cognitive function, etc. So, sometimes, I guess I feel that I don't need the meds when actually my brain is suffering underneath supposedly good functioning.

I've never taken the drug you mentioned for vertigo. I did take phenergan for nausea during pregnancy, and I'm sensitive to it; it gives me convulsions. I think that's POTS related because the drug has warnings that it increases HR. Zofran worked for me, but it comes with gastro side effects. It is a big constipator! I took it for 7 months while pregnant. Messed with my IBS a lot.

sorry I'm hopping into this discussion late... The warnings on ProAm talk about supine hypertension (spiked bp, shouldn't take then lay down), but I asked my cardiologist/POTS specialist about that, and he said that is true for Parkinsons patients not POTS patients. No worries; take and go to bed. But I did have several problem periods with Midodrine. Just like some of you said, it lowered my HR. I started out on 40mg/day and that really improved my overall symptoms (although it had its own side effects). After a few months, I started to have long fainting spells associated with bradycardia (which I always had intermittently before, but did not faint from it)....would be out for 3 hours at least, like a small comma I guess. With my doctor's guidance, I slashed the meds down to half doses (I was ONLY taking Midodrine, by the way). That worked...for some months, then it started again, and I again slashed the dose in half. So I'm down to 2.5 mg a few times a day. Also, time is sensitive for me. I cannot take Midodrine early in the day or late at night. Earliest safe dose is like 8AM, latest like 7:30/8PM. If I break this habit, I start to get the brady episodes. I read on a Midodrine drug site that some people might be time sensitive the to drug, although the manufacturers/developers themselves aren't sure why.

Thanks everyone for sharing my joy

Woohooo! I'm so happy for you! Congrats!

A little good news. I just wanted to share a little piece of my life with you all during this happy time. I've been visiting this forum on and off since discovering POTS a couple years ago, and some may remember that I strongly encourage all the young POTSers to try distance learning if they cannot attend traditional college studies. There are a lot of option now. My philosophy is: one class at at time will eventually get you the degree. Afterwards, who cares how long it took. I was in my junior year of college when POTS hit--6 years ago. This week, I'm finally done with my degree. It was difficult, and every single semester I thought I was either gonna explode from stress or quit...but I just figured that even if I get a low grade, it's better than getting another semester behind. I took one class the first semester...then two, then three...that was pretty much the limit. It was frustrating, but now I really feel good, like I beat it, with my family's vital support, patience and encouragement. Some days I couldn't get out of bed...sometimes I would faint from reading coursework...but it just doesn't matter now...it doesn't bother me now what I had to endure to get here. I know that many of us experience a lot of personal anguish over lost dreams and goals...I did for so long and still do. But I like to hear about y'all's accomplishments because it reassures me that even though the road is longer for us and sooo much bumpier, we can still get there eventually. So I thought it might help someone else to hear about this goal that I reached after about a decade in college and four different majors Good luck with whatever your struggles are! You WILL win!

Sorry for a belated reply. I read this post some days ago and wanted to reply. But I've been busy with final exams and papers. Still busy, 12 Day Count Down to Graduation! But I wanted to write something in the mean time. It struck me how similar our timelines are. Our cases and life situations are different, however. I am also approaching my 6 year mark with POTS. It started in late May for me. I was also 20 years old at the time. But I'm getting better rather than worse. And I was engaged at 19 and married at 20, only a few months before getting sick. So I do have someone to lean on throughout. Also the pregnancy that turned my condition from worse-worser-worst into a sort of recovery track would not have been possible if I had not been married. But in other senses, I totally ID with you. YES--it's so annoying having to plot out activities, just as you said, dishes OR laundry OR playing with daughter OR cooking a meal OR school work. Seldom any combination. Thankfully, I have been getting better rather than worse. Whenever I suffer a flare-up, however, it seems like it's all back to square one. Sometimes bedrested, dizzy all the time, nauseaus, headaches, weakness etc. My wheelchair is ready and waiting...but sometimes even that is useless. But I do have periods between that in which I can get some stuff done for my life and my family. It's annoying because I never know when the flare-up will swoop back into my life and mess everything up. But I get along pretty well just knowing that it will eventually lift. If the disease were getting worse overall, I would have a major problem coping. It was like that the first six or ten months. Very difficult. Pregnancy is the only thing that turned it around for me. I don't know why, but maybe it was just enough chemical shake-up and blood volume increase or whatever. I hope that something eventually works for you.

A second thought.... IVs. Many of us sometimes visit the ER just to get IV fluids (there's not much else they can do, is there?). From living in the US, I know this is the most direct way to access the health care service immediately. However, in Saudia, when I need an IV, I don't leave my house for it, and I don't pay a bundle for services I don't need (like brainless ER docs). My husband goes tothe local clinic and brings a nurse home to me. She puts the IV in, and sets the pace for the fluid drip. An hour or two later, I pull the line out myself (it's not hard). I think this kind of nursing service IS available in the US, if you pre-arrange a relationship with a nurse. There are nursing agencies for home care. If you know you'll need IV fluids, it's better to just get it at home with a nursing service. Just an idea.

I totally sympathize with your dilemma in work. It's hard to be independent and have POTS or any other chronic illness. Personally, I've had to learn to lean on others more, and sometimes feel guilty about "burdening" people around me, though I know they don't see it that way. And at work, I have found that the only way I can be reliable on a team is to go part-time and work from home. The ideal thing is short-term projects as a freelancer or contractor/consultant. But I know that doesn't work for every field. Good periods, I can work from home consistently. Bad periods, I have to drop projects and feel lousy about it. But hey, life goes on. We gotta just do what we can when we can, right?

from the things you said about what makes you tired and how you feel when it strikes, you really sound like a POTS patient to me. Bending over....sex....these things are SOOO POTS triggers....and I am not aware of any other disease that has those provocations. The fact that you can function sometimes and not others also sounds like POTS. I am classic for POTS, with no other disease explaining my difficulties. And I can sometimes mop the kitchen floor, go shopping, play with my daughter, etc. Other days, I cannot get out of bed without feeling like death walking. That's the way it goes. Sometimes the flip happens very suddenly. It helps to know your triggers and avoid them. Like, it helped me a lot when I realized that I get tachy'ed-out when I lift my arms over my head/shoulders level. It took several years (Dodo that I am) to realize that this was happening. Why don't your doctors do a TTT without the injection? Then they cannot blame the abnormal numbers on the drug effect. It's EXTREMELY frustrating to be sick and not have a diagnosis. I was sick with POTS for 4.5 years before I got my diagnosis, and although it came with mixed feelings, it really helped me move on. Hope you get clarity soon.

I was pregnant when POTS hit, but lost that baby at 8 wks. 6 Months later, we tried again, and now I have my daughter, who is 4 years old. During the second pregnancy, I became better overall. I was fainting an average of 3xs per day before pregnancy (for 6 months). Dizziness was CONSTANT, and I was bedridden. During the first trimester, however, I stopped fainting for two months! Tired, but not bedridden (at age 20). This is despite the fact that I was hyperemic, grossly underweight and almost TPN'ed due to the vomitting and wieght loss. (I recently saw an inexperienced doctor who chalked my entire disease up to being underweight, but I'm now 30 pounds heavier than that time, which was the best symptom-wise.) I believe this is due to increased blood volume...but since I was in kitosis and constantly dehydrated, it doesn't really make much sense at all. Once second trimester began, nausea subsided slightly and I began to faint again. When I delivered, I didn't faint for two or three weeks, then it quickly got to be 5xs per day. This is probably because of sleep disturbance, nursing through out the night. Once my husband started helping (by carrying the baby to my bed to nurse night feedings), the fainting subsided to 1x per day. Fatigue and overall dizziness was still better than before the pregnancy. When I stopped nursing (14 months), it also helped. This all happened before diagnosis, but after becoming sick. I was diagnosed when my daughter was 3 years old, fainting an average of 1x per week, and put on Midodrine. I am now almost fainting-free (about 1x month), but have fatigue and some other symptoms (shortness of breath, cognitive difficulties). The turn-around point was the first trimester of the pregnancy though....of course the later meds helped a great deal.

my aunt has this disease. But not POTS. I'm not sure that it is related to autonomic dysfunction. Is it? She has a lot of medical problems, and the family doesn't know exactly why. But she was in a car crash some years ago. Also, she had to have a total hystorectomy (sp?) like 15 years back. She thinks that a lot of her medical problems really resulted from the hyst. But she did also have some brain and nerve damage from the car crash. I'll be interested in whether anyone else here has sjogren's or knows if there's a connection with dysautonomia.