masumeh

My doctor was also concerned about my VD levels, and suspected that my bones have been breaking down alongside my muscle deconditioning since developing POTS. So he prescribed about the same, if I remember. 4,000 is typical, I think. I can check my records to make sure...but it sounds like a familiar number. (Naughty me, I never took a single one...but I take Flintsones kidy vitamins regularly, and that seems to do me. To me, they taste good and digest well...so anything that makes me actually stick to the dose is best in the end.)

Hi all.. Just wanted to update this brady and passing out issue... Same "crash" (as I now named them) happened a couple more times before I was able to get a hold of my doctor...and because I was getting worse fast, I started to skip doses of Midodrine before I spoke with him. When the doc heard about my going in and out of consciousness, he wanted to see me, but that's not possible bc I'm overseas. So we tried cutting my dosage in half. Now I'm on 5 mg instead of 10, five times daily. I really feel much more like myself. No hyperness/mania. No crampiness and hyper swings to work out the muscle aches. And I stopped crashing...still faint as usual..and started to black out several times daily, like before the midodrine. But, I prefer this to the crashes...they were really intolerable. Also, my sound sensitivity is toned down, and that was reallly erksome to me before. So I guess we will keep playing with the meds till I get a balance btw fainting and crashing. Thanks for everyone's answers and concern!

For me, this got much worse when I started midodrine. To help, my doctor suggested going on the tred mil for 10 minutes before bed, followed by a soak in warm water, and straight to the sheets. Well...he said that the walk would burn the adrenaline out of my blood...and the warm water would relax my muscles. I have never had the end-of-day gas for this though. Maybe if I tried it, it could actually do me some good. Hope you find some relief soon. It's really cyclic to be too tired to sleep...I mean, it just doesn't go away because you don't get enough rest to recover...and the non-sleep in bed turns into psyc-based insomnia really fast. Ok, trying to edit in again....the one thing I tried that did help was a simple regular strength Tylenol, 1/2 hour before bedtime. It relieves the aches, and some of the wierd tightness in my body and head.

Just wanted to say that I'm really proud of you for being overqualified...and I hope you find and excellent job soon!

couple short comments 'cause I didn't read all of the previous... 1) my big tip for traveling is Ear Plugs!!! It's very noisey in airports. 2) for the hyperventilation, try to calm yourself and remind yourself to relax and pretend you are at home...if all else fails, you can breathe into a paper bag. Hope you have a great trip and lots of fun and relaxation!!

Salt wasting is a symptom of Addison's Disease, which involves adrenal insufficency. I only know this because my pulmonologist 5 yrs back suspected Addisons was at root of my fainting. I had an adrenal function test conducted after initial blood tests showed low cortisol levels....they give you a shot in your shoulder of ACT and watch the associated adrenal hormone levels rise over the following half hour or so. Mine was normal in the end. In fact, cortisol was high at that time (ended up I was pregnant). Anyways....Addisonian patients often have fainting episodes, if they occur back to back, they need medical attention and therefore wear wrist bands with Addison's labels. It's a serious disease and can result in fatal shock if left untreated. Florinef is primarily a medication for Addisonian patients....but we POTSers get the benefit of retaining water to increase blood volume too. They also take salt suppliments, like many of us do.

I wanted to chime in to second Tearose on a point: Call the drug company itself, or write to them. It's important to them, I'm sure, that their product be as availible as possible to their customers...that's simple good business logic. So, I'm sure your feedback will be valuable to them...and probably to other patients who might encounter the same problem as you are having now. Also, they might be the best authority to help you find a distributor close and convenient to your location. Good luck!

I have noticed a similar problem, but not with exercise. When anything exciting or demanding happens in my schedule, I am almost always fine during the event, but I get the crash when the calming down part comes afterwards. Like, when I host a friend for dinner, I can cook, clean, and host, but then when it's over I know I will crash, and sometimes take many days to recover from, if not weeks. During exercise, however, I feel the fatigue immediately...I get the tachy and my blood seems to magnetize to my calfs, which then feel like lead and get painful. Breathing is difficult immediately. But other, more mild forms of physical exersion, I do well during but crash after. This is interesting to me becuase the Autonomic Nervous system has two main functions and related categorization of nerves and processes: excite, calm. Parasympathetic and Sympatheic nerves are different...and maybe one is more damaged/dysfunctional for us than the other. I think that for exercise intolerance, we could, each at his/her own level of endurance, try different forms and degrees of stress...like, if we can't run, that doesn't mean we can't walk. If we can't walk, that doesn't mean we can't do laying leg lifts. Etc. Personally, I found that I can do a lot more with my arms than I can do with my legs. My arms are usually relatively strong, while my legs can basically tolerate a long walk once or twice a week, and the normal moving around the house stuff. Sometimes I find that I can do a few aerobic moves, here and there through out the day...but nothing longer than a few minutes at a stretch. I love exercise and I know my body needs to maintain any strength possible..so I just keep trying different variations in length, style, etc. I suppose cumulatively, there's a benefit.

I think you should check with whoever prescribed your medication before acting on the advice of another doctor, especially and ER dude. You know, they see too many cases per day. Also, they know that they will probably never see you again, so they do not have to deal with the long term side effects of their advice (or more commonly the lack thereof). Hope you feel some relief soon!

Thank you both for the replies. Maybe my experience is not so uncommon...if brady is generally worse than tachy for many others. Tearose, yes, I was having difficulty breathing. I was crying because all my senses were screaming, that's I guess the best description. I could not stand the irritation, so I took a Tylenol. My skin was crawling and I was touch sensitive. My ears, very, very bad sound sensitivity (I put my earplugs in, that was a bit better). My nose, every smell made me want to puke. I was very nauseaus. My eyes, I just had to close them to block out the motions, and had to turn out the lights in the room. It was just very extreme compared to what I normally feel. And my whole body felt weak too....I remember reaching to pull my blanket onto me (btw a hot and cold flash), and I couldn't. I tried to yank it hard and pulled my bicept muscle. It was wierd and sudden, because just that morning I was really rolling with laundry, school work, tutoring, and playing with my child without worrying much about symptoms. It had been a very good day. I was slipping in and out of consciousness because of the "no blood to brain" thing...no fever. This happened to me twice before, all three incidents happened after I started Midodrine, so I suspect it is somehow involved. Maybe because I feel hyper on it, and to work out the crampy muscle feeling I get, I have to almost constantly move. Then, when the med runs out, I sometimes crash and burn. I think this might have been what happened. But, it might also be possible that I only get brady due to the med, since it is suppose to bring down my tachy. But I don't think a vasopressor typically causes brady. I hope. I'll post an update after I get a hold of my doctor, if he has any answers.

Didn't read all the others...so sorry if this repeats previous ideas... Just one big one: If you have sound sensitivity (like me), don't forget the EAR PLUGS!

Mmmmmm.....chocolate.... I can see this thread is going to be really tempting.

I saw a documentary on service dogs. Actually, if you want to see it, it's availible in the Discovery Store, and it's part of "The Best of Nature" series on DVD. Anyway...it showed how they train them, briefly (Madeline, they train them to resist distraction, obey, etc. by starting with tennis balls and then moving on to the actual aims like picking up clothes and putting them in the laudry). It also showed a dog that was undergoing training as a seizure alert dog. They said that some dogs have a 6th sense about oncoming siezures and naturally act to make the person sit down, then they run around barking and pulling on ppl's clothes to attract help. They train them to act more calmly and not to interfere with the person's breathing, etc. But the response is essentially natural and not all dogs have it, but some do. Maybe this would help with GD Storms?? You know, they also said that service dogs have high price tags and long waiting lists. But maybe any kind of a household pet, like a cat or anything, would make your life easier while your husband's traveling??

For those of you who get both bradycardia and tachycardia, do you experience different symptoms with each??? I usually just get the tachy, but recently have had a couple sessions of brady and felt markedly worse... But I was thinking maybe I'm just so used to the tachy, it doesn't turn my head anymore. The brady (45) sent me to bed crying. I was in and out of consciousness for a few hours. Maybe something else was going on. I'm headed trying to get a hold of my doc. but thought I'd post in the mean time.

NO! Thank God. I love vinegar...I'm the household pickle juice drinker. (Yeah, yeah, I know it's wierd.) Of course, this habbit formed way before the IBS, and cannot co-exist with flare ups of IBS. But my GI troubles are very well managed, and I enjoy pickles and even eat those Indian mango spice pickles! Wow...now that's poison during a flare up. But hey, I live when I can. Now chocolate, eggs, and milk....these are bad news to my POTS symptoms. I'm not sure why. I mean, the eggs and milk, I am allergic. But the chocolate, I cannot figure that one out.

No cures, but a big hug coming your way!!! Try not to indulge the feelings of guilt with reinforcing thoughts. You know that you wish she were healthy and strong, and that you would give everything for that to happen. You know that you didn't "Pass it on" willingly. And I'm sure that you also "passed on" many, many great qualities that add to her character and life!! Maybe hereditary illness is part of a wisdom in creation, that the child who needs understanding and knowledge about a disease is given to a parent who has just that. I don't know if you are religious..but that is what helps me...to be sure that it's not my plan, it's God's plan...and if I don't understand, at least I know that He does, and that there is a reason somewhere. Don't want to preach, but I just think this is what most ppl believe, in most religions (personally, I'm Muslim, but I know many Christians, my Gramma for one, who believe the same)...and it helps during a moment of crisis to remind ourselves of our deep-down guiding principles. This is the biggest way I cope with the fact that I got this disease from a virus, and I know who gave me the virus, and I don't want to blame him. I just say, I know that God planned this, and God knows why. In the end, I look forward to His reward for my struggles. I hope that your daughter finds strength in you, and that you are able to overcome the temptation to blame yourself, while you are obviously blameless and a very caring mother!

my POTS doctor gave me an associated diagnosis of hypermobility joint syndrome. No EDS, because this is not in my family. It's a "syndome" instead of just "hypermobility" because I have medical problems associated with the extra motion (dislocations, subluxations, cartelage degenerations, nerve impingement, in wrists, knees, ankles, jaw, shoulders). The scale about how far you can twist your joints, pull back your fingers, etc. doesn't work for me. I mean, my joints are clearly medically loose, and I have the injuries to demonstrate this...but I cannot pull my finger back or any of that. I think that if my muscles weren't deconditioned from the POTS, I wouldn't have a joint problem. But you never know.

I don't want to be unsupportive....but I'd like to add something just to kind of advise against sharing too much about the POTS with non-POTSers. It's not like an US vs. THEM thing....but they just don't understand, and they come away from the conversation with a tag on you in their minds. Even doctors sometimes don't understand how it FEELS. I think it helps to ID ppl who can understand and ppl who can't. To me, basically, I know that almost everyone around me, no matter how supportive they are, cannot understand. For the ones who just don't care, they actually seem pleased if I express suffering. I guess it makes them feel lucky for their small problems...but I hate that look on their faces. For the ones who care, it upsets them to hear how much I go through. So I have a general policy that when I'm down about it, I come to this forum and just feel normal for half hour or so, reading everybody's posts and commenting where I can find a relevant thing to add. I try to check myself from verbalizing anything else about the pots to healthy ppl. It's just like that. But inside, I think I do get obsessed...at least there are days like that. Before I knew what I had, I tried harder to block it out bc of thinking that it might be conversion disorder. Now that I know what I have, I am trying hard to get a grip on it, and to figure out what my prognosis will be like in the long term, what meds might help get me back into normal activities, what steps I should take to better care for my child and protect her from psychological effects of seeing me sick her whole life...etc. So, yes, I am obsessed....and it doesn't help much that I don't have enough energy to do much else for distraction. I don't like the obsessed days. I get annoyed from myself....I would like a break from my own mind sometimes. I don't like the constant nag in the back of my head that says, "You're only 25 and you'll be sick for the rest of your life....Your 80 year old grandmother does more than you....Get up and try harder....Just one more day..." and so forth. That's why prayer is the best outlet in the end. Praising God and His perfection, thanking Him for His every day blessings....it just transforms me. So, I guess I'm obsessed, but working on it behaviorally by checking myself verbally and inside too by trying to switch off the negative and just remember God more. Hmmm..rereading this, I'm starting to doubt that any of it makes sense. Guess I'll post it anyways...

I've only used wheelchairs when they were available, like at the hospital or airports. Because I don't work or study out of the house, I was able to just manage by staying home on bad days. During the time I was bedridden/wheelchair bound, my husband used to carry me to the car, carry me to the chair. I only went to hospitals at that time anyways. Around the house, we had an office chair with wheels that he would scoot me to the bathroom and back to bed in. My airport experiences were messed up. Because I have clotting issues, I have to walk some of the time after a long sit in the plane...but because of the risk of fainting on a hard surface, I request the wheelchair escort when I travel alone. So, when ppl see me get out of the chair to walk a while (or to get up because I need to do things that I cannot do from the chair, like get my bags off the conveyer belt), I start hearing whispers like, "Oh my God! She's a fraud!" It's really erksome because ppl cannot understand that there are all levels of disability, not just fine or paralyzed. Especially as a young person, ppl really seem to get offensive and say things loud enough for me to hear, but not directed at me so I could answer them and dispell the myth. Really annoying! Another thing I noticed is that many places, maybe most places, will have just one or two little steps or things in the way that make the wheelchair useless...then you have to be able to get up and pull the thing, then you feel embarassed to sit back down in it because ppl are going to be like, "If you can walk, why are you using a wheelchair?" If they actually ask, that would be a blessing...but they don't...they just stare and whisper! I guess it would help around the work place if you let some people know what you're planning and why. Then when the behind-your-back whispers start, there will be informed ppl to correct the gossip. Also, if I were in your place, I would inspect the runway before you bring the chair on the scene...like, know the places where you might not be able to use it because of a step in the way or a tight/narrow squeeze. Also remember that in parking lots, you will not be eye level... Well...that's my two cents.

A quick point on the laying down thing...when I read the Midodrine leaflette, I kept myself from daytime naps out of fear of supine hypertension. But then my cardiologist reassured me that this warning is for patients taking Midodrine for Parkinson's Disease and some other things that don't relate to POTS. My starting dose was same as current dosage: 10 mg, 4 xs a day (actually, the starter was three times, but when I reported dizziness at the ware off time 8PM, he upped it to a fourth at 8PM). It can be taken as close together as every three hours, according to the ProAmatine website. I generally take mine at 9:00AM, 12:30, 3:30, 7:00PM...I worked out the schedule for myself because it wares off for me at about 2.5 hours after taking the pill. Waring off gaps is usually when I faint. If 2.5mg isn't working for you, tell your doc and he'll probably up it to 5mg. I think 5mg 3xs a day is the usual dose (usually, it's "upon waking up, 11AM, 3PM"). My 10mg was an aggressive move on my cardio's part, I think. My case was judged to be severe, I guess, and he warned me that I would have a horrible time with side effects, but that this would pass within 7-10 days, and it did. Also I was traveling for treatment; maybe if I was resident he would have had time for gradual increase. I wrote the side effects down at the time to discuss it with my doc (memory problems, my note book is great support). The note says, stiff neck; shortness of breath; tearing; weepiness; tenderness in stomach; stiff limbs and fingers; goose bumps; headache; muscle aches (back, arms, legs); pain in chest. There's a note that says, "*most severe 1hr-1:30minutes after taking pill" Another part of the note says: "Benefits- no fainting; feel better in head (except for headaches); not as tired, just feel heavy" There's no build up. You should know the first day if you are responsive or not.

WOW, you and your mom look so similar. My friend and her baby boy are like twins too...it's cute! Both your parents must be so proud. Congrats! Very inspiring for me, I'm still chipping away at my Bachelors that I had to drop junior year due to pots. Doing it Distance Learning now. Be done next year, hopefully! What's your major? I hope you continue to move ahead with your life goals, and never stop learning and growing!!! Peace, Masumeh

I don't notice it when I'm busy, until I slow down and all of a sudden realize that I'm not quite right. Then it's a bunch of symtoms together, so I only started paying special attention to the racing heart feeling after my cardiologist kept asking me, "When do you feel the palpitations? When do you feel the tachycardia?" Otherwise, I was always more in focus w/the visual disturbances because that was a better predictor of an imminant faint. Without the heart rate watch, I can't really tell if I feel out of it bc of tachy or bc of some other fatigueish potsiness.

Can't recommend anybody since I'm way out of your area. But I hope you find a good one! Maybe some online directories would be of use for you. We used to be with Mamsi, and their site has a doctor directory. I think it's mamsi.com Also, if you're looking for someone who can order treatments related to the pots, this might be over the head of a primary care phys. Try the dinet directory of pots doctors for someone local. You know, a doctor has to have personal convinction in the care tactics he/she prescribes...it's not enough for them to follow another doctor's directions because the other doctor will not be liable if that was in error.

I've heard that POTS tends to include chemical sensitivity. So, many medications (heavy chemicals, poured right into your body) can have backward effects on us...bad instead of good...worse instead of better. I think this goes for external chemical exposure too...I used to faint if I pass by the detergent isle of the grocery store, when the pots was the worst. Chemical sensitivity makes some sense, since we're like everything sensitive, it seems (sound, touch, lights/movement, bla bla bla). Also, another complication with taking antibiotics for pots patients, many of us have IBS or other GI problems bc of the pots. Many antibiotics are hard on the stomach. Anything that is remotely difficult on the stomach will give me pain and digestive problems. I usually cannot complete antibiotic courses because by the fifth day or so, I cannot eat a thing.

YES! Stairs are particularly hard on my tachy. Doesn't help my knees much either. But the pots really comes out when I take the stairs. It's something my husband noticed before I discovered pots info, when I still didn't know what was wrong with me. I would faint almost predictably coming home. I didn't figure out until after the diagnosis that this was due to the climb to the apartment. At the time, I actually thought I might have some kind of subconscious psychological aversion to my house! Hehehe. Anyways, the only thing worse than stairs (other than changing posture) is raising my arms above my head. The heavy feeling in your/our legs is because the blood pools there. It can also feel painful. I get vague pain in my calf muscles. Then my legs just stop working. That's usually right before a full faint.