masumeh

I haven't been able to see my doctor about the med yet, but I'll update again when I do.

Tearose, I don't know why either. It came with POTS for me, and it seems to fluctuate with my other symptoms. I sometimes just feel so weak, other times I'm able to use those muscles fine. Is it blood flow? Is it neuro functioning? I don't know. I'm not usually able to tolerate exercise tachy-wise. I'm going to start physical therapy for my knees soon, but I'm not sure that I'll be able to tolerate it. Usually I can go walking once or twice a week without inducing a major flare-up (which puts me out for at least two weeks). Before POTS, I was an athlete, very active runner, soccer player, rollerblading, biking...coaching and playing on travel teams, school teams, etc. But as soon as I got POTS, I could barely walk. Whenever I rebuild myself a little, I slip behind at the first flare up. My muscles are mush.

The doctor told me that Mestinon prevents my body from breaking down acetilycholine (sp?), which my muscles need in order to function properly. He said, "You might find that it helps your other symptoms as well, dizziness, etc."

For me, it didn't immediately affect my dizziness, but it did immediately help tighten my joints. Side effect were crazy...there's a warning about "increased urination" but for me it was like very clearly increased to the degree of dehydrating me, and that didn't ware off until about 48 hours after stopping the pill. It also made me feel like I was about to have diarhea, but I wasn't....just had a gurgley stomach for like the entire day. I hope that I can re-start the pill in a way that will avoid these side-effects because they are totally unacceptable, I mean I cannot tolerate the pill with these problems attached.

This situation stinks! I'm so sorry that it has happened to you. It must be very frustrating. On one hand, it's clear that the employer has some right since you cannot do part of the job that they want to be done in that job position. On the other hand, you can do everything else, so that's really frustrating that because of just one part of the job, your employer doesn't feel you can be relied upon. It just stinks. What I would do? I think I'd go home and brake something, then start applying to other jobs. If it's possible, I might ask the current employer to re-assign me to a different position, where I wouldn't have to encounter tasks that induce syncope.

Hope you find a good solution.

Thanks to everyone who voted! It's a really interesting issue, and not as simple as textbook descriptions of the autonomic nervous system's role in emotion. I think that to address the psychological problems that sometimes accompany POTS, such as anxiety and depression, we will one day need to delve into some serious biopsychological research. The interaction between the adrenal-endocrine processes, autonomic rellaying of heart rate and other exitatory responses to the brain, and cognitive responses maybe doesn't work exactly the way current biopsychological models describe. Otherwise, we would mostly be experiencing dulled emotions after dysautonomia, while in fact more than half of us seem to have increased emotionality.

Thanks again for the responses.

Great job! I'm proud of you too. It's difficult to address those chronic issues...we're so often stuck in a crisis cycle, focusing on the worst symptoms first, but they can't really every be totally resolved and we need to address the chronic, stealthy symptoms between those crisis periods too.

Hope this program works out for you

Thanks all for your helpful comments. I need to reconnect with my doctor about this med. Maybe a lower dose, tapering up, would help.

My POTS doc recently tried me on Mestinon (pyridostigmine), 60mg thrice daily. It is suppose to treat myasthenia gravis, or muscle deconditioning. Doc said it's a new drug, and we can just "try" it. It didn't work because it increased urination and dehydrated me within a day. It also antagonized my nausea. But it did tighten my joints up! That was a marked difference within 24 hours. I could feel the laxity in my knees return when I discontinued.

Just wondering if anyone else has tried this medication.

Strangest place.... toss up between my college campus's busiest staircase and a street in front of our house. Street was cold. Brrrr.

Strangest person's comment... First time my dad saw it, he just kept saying, "Wake up. Whenever you want to wake up. Can you wake up now? Not yet? Ok. How about now? Are you awake yet? Can you hear me? If you can hear me, say something? Oh, no, if you can hear me, do something. Blink your eyes. Are you awake? I know you can hear me. Wake up!" Then when my mom tried to convince him that I'm having an episode, but I can hear, he insisted that I cannot hear and I am just asleep (in the middle of the living room floor). That faint was brady shock and lasted about 2 hours. (I can hear while I'm out, but I can't move, speak, etc.)

Most people try to give me juice. I think they assume I've had a diabetic siezure from low blood sugar.

Most annoying is when they try to move my body while I'm out. It usually ends up injuring me.

Please share our joy...my brother's wife delivered a wonderful little baby boy into the world at 3AM yesterday! He's bald but beautiful

This is their first child, and my only sibling....so I'm an aunt! Woohoo!

I was just thinking about this poem and how people kind of like to borrow positive energy by positive company; but how this also means that few sturdy friends stay close during a hardship. Probably we all know this poem, but it's so good, thought I'd post it in case some of us haven't seen it before.

SOLITUDE

Laugh, and the world laughs with you:

Weep, and you weep alone;

For the sad old earth

Must borrow its mirth,

It has trouble enough of its own.

Sing, and the hills will answer;

Sigh, it is lost on the air;

The echoes bound

To a joyful sound,

But shrink from voicing care.

Rejoice, and men will seek you;

Grieve, and they turn and go;

They want full measure

Of all your pleasure,

But they do not want your woe.

Be glad, and your friends are many;

Be sad, and you lose them all;

There are none to decline

Your nectared wine,

But alone you must drink life's gall.

Feast, and your halls are crowded;

Fast, and the world goes by;

Succeed and give,

And it helps you live,

But no man can help you die.

There is room in the halls of pleasure

For a long and lordly train;

But one by one

We must all file on

Through the narrow aisles of pain.

When episode-like symptoms are overwhelming, I find a quiet, dark place to lay down. If I let myself stay where noise and activity is going on, I just can't cope. The sounds get to my head very fast. So does light. When there's a lot of pain, I count or repeat things to myself, such as, "This is just one day, it will pass". Or, "All I need to do is relax. Maryam will be fine" because I tend to worry about my daughter when I'm going out of consciousness.

When it's not possible to take time out, and I'm having high adrenaline symptoms (which I will not faint right away from) I grind my teeth and push myself. I try not to speak. I avoid being touched. That way, I don't blow up on anyone. I try to keep moving if I have to be on my feet. Once I stop moving, I need to go lay down and will probably pass out.

It's kind of complicated because the symptoms vary and have so many different roots. I do something a bit different for different kinds of symptoms.

It must be very difficult to know that they are sick. In Arabic, we say: Al-Khalatu k-al-Umm; which means, "The maternal aunt is most like the mother." Because sisters are so close, they are also very close to each others' children. It is better to know, however. She can plan her life better that way. It must be shocking news to all your family, however. I hope that this research helps all of you. It's courageous of you to keep pushing ahead. It might help if you detach a bit, just enough to cope emotionally. You are not responsable for the illness, just because through your efforts it was detected. You know that.

THat's true. It becomes easier to use a term than to describe something (which takes more words and is sometimes vague).

Also, however, some people in this forum are actually involved in the medical field. Cardiatec is a cardio-technician (if the name did not give it away, the terminology might). There are some nurses and some doctors in here somewhere also. But yeah, everyone sort of becomes an expert and learns the terms that apply to their symptoms. It helps us understand literature about POTS, some doctors who like to use terms, and as I said already, it's simply a shorter way of saying something.

My periods became much lighter on Midodrine. Could a medication be causing the difference for you?

Yes, I think POTS, or perhaps more accurately dysautonomia, can cause hormone imbalances, deficiencies or high levels. Hyperadregenic POTS results in this, right?

I'm so sorry for your loss. It can be difficult to lose a baby, even early in pregnancy. Takes some time to process the event when "all of a sudden, the heart rate is gone", as so often happens. Most people will never know exactly why.

Of course, with POTS, we suspect that something might have been going wrong with our bodies. I had one hemotologist tell me that my first miscarriage might have been due to clotting, because my liver was not producing enough Protien S. But God knows. It's hard to let go after fighting so hard for the child; puking, fatigue, etc. But I trust it was for the best. My second pregnancy was horrible in terms of nausea and fatigue. But the baby was perfectly healthy, born full term. I guess it can go either way.

My POTS specialist told me that many of his women patients have had trouble concieving before treatment, then are able to have healthy pregnancies and babies after being treated for at least 6 months on Midodrine and whatever other meds they require. Not designed for or aimed at the fertility issue, mind you. Just improves along with other POTS issues.

Good luck in your coping, grief, and future parenthood experiences.

I'll echo. Your doc is wack. But if it doesn't bother you when it in the 50's, I mean if it actually feels better to you, then it's not so far away from 60 to be concerned; also everyone is really a bit different from others and not necessarily in the "average" to be in their personal "normal".

Bottom line, go with your symptoms when the numbers are borderline.

I had a 24 hour holter monitor during the first year of suffering from POTS (which was the most severe for me). But that cardiologist was totally incredulous toward the disease. I had two fainting episodes while hooked up. In reviewing the results, he simply said, "Everything is normal. You only had tachycardia during the fainting, and that is normal for fainting." He didn't diagnose me. Rather, he referred me to a neurologist to investigate the possiblity of epilepsy. I had to be diagnosed by a different cardiologist four years later.

But if you are seeing a POTS specialist, then hopefully you will have a better experience.

For those who had holter monitors conducted, what did your results show?

I forgot to mention my most potent tactic. For people who really, really don't get it, and they think I'm lazy and not "pulling my load" around the house or whatever, I give them a demonstration.

For example, my grandmother has memory problems and when we were both having an extended visit at my mother's house, she was frequently saying, "Why isn't Masumeh doing this with us? Should she be helping?" etc. One time we were alone in the house and I was studying for final exams. She interrupted my studies to ask me to get something for her from downstairs. I knew that I would most likely faint if I got up. So I just said, "Ok." And I got about ten feet away and fainted and had siezure like symptoms for about an hour. SHe needed to see that. She didn't forget it, even though she has Alziemers. She still has a very supportive attitude about my POTS after that.

I guess we all have our ways of coping and teaching awareness when we can.

I think in a way I was lucky that my symptoms were so severe, it was obvious to most close family that I was severely ill. There are still people who have "their own theories" about my symptoms. That's so annoying. I just block it out. If they don't WANT to understand, maybe they are not ready psychologically. THey're in denial or whatever. When they talk to me about it, however, I give them concrete reasons why I cannot do certain things.

My father is one who had a hard time understanding my illness. I still have to re-explain to him what it is. It's been YEARS. But he cannot really accept that it's not changing much. Underneath the frustration that I feel with him, I also understand that he simply loves me too much to admit that I am going to suffer from this for many years.

To get through to people like my father, who just have a hard time understanding it all, I use the phrase, "irreversable Nerve Damage". That's simple enough. I explain that medication can treat the symptoms but not heal the origin. For solution-driven people, like you know the ones who are always suggesting bogus miracle cures, I use the phrase "Cannot Be Fixed" and then repeat "Irreversable Nerve Damage".

For people who tell me that I'm negative (becuase I accept my illness), and lecture that I "must think positive in order to get better", I tell them, "Would you ask me to re-grow my arm if it had been chopped off? You can't see my nerves, but they're damaged, and they cannot grow back."

If all else fails, and I'm talking about those extremely persistent people who just can't stand it that you cannot be fixed, I say, "I'm doing the best I can" and walk away. Or I say, "Can we please focus on the things I CAN do, rather than on my disease?" That usually shuts them up. For a while.

Of course, I had to work through my own denial and feelings about being perminently ill before I was strong enough emotionally to discuss this with those kinds of family members.

It helped some of them to see others who are suffering from similar symptoms, like on YouTube.

It's a process of acceptance for all of us and those connected meaningfully to us. It doesn't happen in a day or a year. It's ongoing.

I think hypoglycemia is one of those common misdiagnosis that POTSers run into. I got it many times before I found a POTS specialist. But my blood sugar was never below 50. (60 is NOT hypoglycemia, although it's on the low side of normal.)

Yes, my blood sugar was often around 60 or 59 right after a meal.

But I never had the fluctuation in blood pressure that you mention experiencing. My bp is usually low-ish, but regular. Do you NCS? I mean, maybe your bp is disregulated by your dysautonomia. We don't all have the same kind of dysregulation. My HR is way wack, but not my bp.

Did you try eating small meals? Eating a large meal can trigger POTS symptoms, fainting, etc. in some of us.

It all sounds SOOO familar--except I get ugly herpes simplex sores--then the infected ear that isn't and runny nose sinus infection that isn't--and flu symptoms without fever.

So you are NOT alone!

I was also thinking that this sounds a lot like Oral Herpes. It does give "flu like" symptoms and no actual high fever. Did you check that out? If you have never had it before, the first outbreak is the worst, and you need to have the doctor swab it and test it while the ulcers are open and active. Did you think about strep throat? If it's one of these, you will benefit from an antibiotic, so it's best to check it out ASAP.

Hope you feel better soon!

Just wanted to add that both POTS and epilepsy can be treated, so it's worth getting the right diagnosis so you can get on the right medications.

Good luck

I'm gonna echo here....did you do an EEG and test for epilepsy?

To my knowledge POTS episodes generally don't cause the person to urinate or lose bowel movements while unconscious....but epileptic siezures do. We're all a bit different, but I've fainted more than a thousand times (literally) from POTS, and never peed or pooped. When I tested for epilepsy, they asked me about that, and when I said, no, they were like, "OK, you're in the clear, probably".

You might also be suffering from both POTS and epilepsy. You might be having fainting spells from POTS and siezures from epilepsy at different times.

It's worth checking out with a very good neurologist.

If ur psychotropic medication (meds for depression) isn't working for you, you might try cognitive or behavioral therapy. They all have about a 30% success rate. Not everyone's depression is chemical. Cognitive therapy was developed to treat depression, and then branched out to other disorders. So it's a fairly effective treatment.

Depression is incredibly common, even among otherwise healthy people. It makes us feel bad about ourselves, our past and our future. But the reality is that we're probably doing the best we can, and very loved by our friends and family, and just thinking negatively because we're stuck in that swing. Admitting your competencies and strength can be a great help, it really alleviates the depression if you're able to do it. Try writing down the things you're good at, the things people love about you, and the things you have achieved in your life.

No one is a perfect mom or dad. Have you ever seen the movie "I Am Sam"? I think you should rent it, if you haven't. It's really great for putting parenthood and life in general in perspective....I think.

I'm also a limited in terms of activities with my daughter. She's almost 5 years old now, and I've had POTS since before the pregnancy. I rely heavily on relatives to give her exciting activities like swimming and biking with my dad, going shopping with my mom, going visiting to different places like pony rides with my husband. It takes a support system to raise any child with all the love he/she needs. So we're sick. So we can't do EVERYTHING. So what? It's really not going to traumatize the child. We're probably the ones missing out, not the child himself/herself. In fact, I think that my daughter has a hieghtened sense of sympathy, perspective taking, and compassion due to my illness. She also has a lot more knowledge about medicine and physiology than any other 5 yr old I've ever known. Maybe she'll grow up to be a great doctor because of my POTS...you never know

I think it helps to always do whatever we can with our kids, and to let them know that we really want to do more, we simply can't because we're sick. They do eventually understand.

Hi and welcome to the forum! Glad you've joined us.

As to the cause question, my doctors and I figured it was a result of autonomic nerve damage that occurred due to a mono infection at age 20. That's when I started fainting, being dizzy, fatigued, short of breath, etc. It was concurrent with the mono, but I think that the EBV (mono virus) affected me so badly because I was already down from stress and wieght loss (from taking INH earlier that year). Maybe I was also prone due to collegen issues, God knows. I think it's hard to figure out exactly why one person has mono at age 20 and is fine two weeks later, while another gets it at the same age and is damaged for life. THere has to be some difference underlying the two outcomes.

Good luck figuring your case out. It's good that you have the right medical support, and that your neuro is willing to go that distance with you.

Welcome to the forum! There are so many helpful people here, your sister included. I'm sure you'll find lots of support and good advice.

I was pregnant twice while sick with POTS. My second pregnancy went all the way (first miscarried). I never took POTS medication during either, however, because I was not yet diagnosed. I did take blood thinners. That is because my liver was not producing the proper balance of protiens, therefore blood was clotting too much. That was probably POTS related, although we didn't know I had this at the time. I also took Zofran through 7 months. Baby was fine and healthy, thank God. She is now 5 years old (in August) and still going strong.

Good luck for a smooth pregnancy and happy, healthy baby!