Aquadiva

My daughter just had surgery on Monday. I'm not sure if her POTS was under very good control at the time as she was ill from another issue. However, after surgery she started to get REALLY dizzy and had vomitting. The strange thing is that it is only in the morning, when she simply raises her head or even the head of the hospital bed. She had major abdominal surgery, so throwing up and dry heaving was not pleasant to say the least. The dr's blamed medication. I think it is POTS. She will go up to 8 hours without ANY medication and she still gets sick, and takes Zofran before getting up. Yesterday and today, she managed not to vomit but still feels terrible until the afternoon and cannot be out of bed.

Do any of you have any experience or information that might be helpful? Each day seems to be a little better, but we are concerned about it happening again as she has two more surgeries coming up.

This is my daughter's second try with ritalin. She really doesn't see any difference when she takes it, but it has only been 2 days. No positive or negative effects. She took 10 mg the first day and 20 the second day. When she tried it before, the same thing-no benefit, no bad side effects. She tried it longer that time, but was on a beta blocker at the same time which we now believe has been making her worse. We have added this back on our own as the only other meds she is taking are bcp and fluoxetine just to see if she notices a difference.

Should she notice a difference right away with stimulants? She isn't interested in continuing taking it without seeing a benefit, but I have to wonder if it would take a longer trial? Part of me says no as it is such a short acting medication. She needs it mostly for concentration and energy.

Aquadiva

This is a common problem. Many docs (even so called dysautonmia specialists) don't know the drugs. It is the reason we go to Grubb. It seems that alot of people do not do well with the beta blockers. For my daughter, the order was florinef and wellbutrin xl,midodrine, mestinon. I do not understand why these docs have not read the research out there.

I was able to get someone local to start the florinef (she knew Grubb and thought highly of him). Of course, she 1st wanted to know if we would like to wait and she how she did on her own. At that point she had been homebound about 2 1/2 yrs and used a wheelchair alot. Uh - no

Louise

Your poor daughter! How is she doing now?

Well, we saw her new primary care doc and we were VERY happy with him. He is definitely more willing to try different drugs and different combo's. Got more from him than all other visits combined with specialists! He thought maybe Inderal would be worth a try, but I told my daughter not to take it last night. She didn't and said she felt better today. I SURE hope that this could be one of the keys. I hate to think that all this time the drugs have been making her worse, but will be happy to have an improvement. I feel like the specialist diagnosed her (which had already been done 2 years ago) and then thought his job was over! I am SO much happier with this new doctor already!! He is willing to look at the research and would even work with a doctor out east that I talked to on the phone.

My daughter is still waiting to see Dr. Grubb, and even though we are very happy with how things seem to be heading, I think we will still go regardless. Have been waiting since April already and were told it would probably be another couple months.

I think Florinef would be worth a try, but daughter doesn't want to blow up like a balloon. She is going to try adding Ritalin back in now that she isn't taking the bb and see if that gives her any added relief (didn't notice any difference before). She tried Mestinon and it made her nauseated without any benefit. Midodrine is another one that I am interested in along with EPO. She goes back in a week and a half, so we will discuss more with her doc.

My son takes fludrocortisone and now he is only occassionally dizzy. His fatigue and brain fog have been much better lately also, but I'm not sure if the fludrocortisone or his doxepin is responsible. But fludrocortisone definitely gives him relief from being dizzy.

Did he also try the extra fluid and salt before starting fludrocortisone? My daughter has been doing that continuously, and wonder if the fludro will still help? I'm not familiar with doxepin.

Hi, I'm wondering why your daughter hasn't tried Florinef or Midodrine? They didn't work for my son, but those meds do help a lot of people and are usually the first meds a doctor will try.

That is the million dollar question. She is on her 4th dr. for this if you count her pediatrician who basically wouldn't do anything. That is what the current dr. also said about being the first meds, but he switched her from metoprolol to propanolol first (and added fluoxetine and bcp). She was on propanolol 2 years ago and felt worse, but it wasn't the extended release, and I guess propanolol has a better history of improving symptoms?

I am looking for other people's experiences or knowledge with beta blockers. I am wondering if maybe we need to ditch the beta blockers all together and try something else? But what? Daughter hasn't tried florinef or midodrine. Fatigue, dizziness and brain fog are the main issues. Any thoughts/experiences?

How much and how often? How great and immediate are the improvements?

I hate to be Susie-not-so-sunshine right now, but there are *plenty* of us who never got better at all. It really depends on how you got POTS in the first place. Since mine's genetic, and I got really symptomatic in my 20's (I've been symptomatic since at least 4 yrs old), sorry, there's no getting better. The best shot at improvement comes if you're one that contracted a virus, and the onset of POTS happens during or shortly after that. For some, the body seems able to heal over time. However, there are way too many of us who never got better for me to "buy" the "you'll get better over time" argument.

I totally agree. NO ONE knows WHEN or IF anyone with POTS will get better! And, I am NOT willing to just WAIT for SOME day to arrive IF it ever arrives. You have to live your life to the fullest every day, and I will not rest until we have exhausted every possibility of having it the best it can be. For some that will be better than others, unfortunately, but just because she "should get better over time", doesn't mean I will give in and wait while precious days/months/years pass her by. Sorry, but I don't give in easily, and I will not stop fighting until I am satisfied. Maybe I will NEVER be satisfied, but then I will just keep on fighting! I will do everything within my power to make sure she is feeling the best possible.

The good part is that she had a little over a year when she felt pretty good--and then BAM! It hit again. And, that may be what she is facing for the rest of her life, on and off again. But, hey, I will take that over always being sick! In the meantime, when she is sick, I need to help her feel as good as she can and be as normal of a teen as she can. MAN! Being a parent is hard--let alone being a parent of a teen-age girl with 2 chronic illnesses/diseases! It just goes to show that life isn't fair and we have to be thankful for what we DO have. And, for now, I know we DO have medications out there that might help her feel better. Maybe none will help, but they ARE out there to try and why should she be denied the opportunity to try??

I will get off my soapbox now.

So, Mighty Mouse, I am just curious, we don't really know when the POTS came about, but you mention that it is more likely of a recovery if she got it post-viral. It seemed that it was after anesthesia, but she had other things going on at the time so it is kind of hard to tell. I am sure I had POTS also when I was a teen and still have some symptoms, but was never diagnosed. I couldn't stand long enough to dry my hair, or once that was done, curl it, or stand for a hymn in church for some examples. I still get really sick and weak feeling if I stand in line very long, shop too much, get too warm, etc. I have to lie down or at least sit. So, I think it is possibly hereditary as well in her case.

Well, we are at Mayo and that is the response I got, that medication really doesn't play a huge difference and she should gradually improve (gradually? Well, she is certainly not heading in that direction.). There are MANY drugs she could still try, but they really seem to like the "wait it out" approach. I don't agree. We realize there is no "cure", but I feel if there is something that might help get you through, why not? Isn't that what a crutch is? If you have a broken leg, you don't need crutches either! Your leg will still get better without it and much faster than anyone's POTS! Sorry, I am still very frustrated.

But...GOOD news is that I contacted her new primary, and talked to him over the phone. He has agreed to work with us and seemed to know quite a bit about POTS and the different medications. My daughter just switched over to him a couple months ago from pediatrics, but hasn't actually seen him yet. I can tell already that I REALLY like this guy and I know he will be much easier to get in to see and communicate with! What is the worst that could happen? We try some different things, and they don't work? I am willing to spend the time and $$ and take the chance.

Okay, so I am extremely frustrated. My daughter is not getting better, in fact, she is getting worse. I was just told by her dr. that she should just stick with the metoprolol, that drugs are just a crutch and she should eventually get better over time. I am so disappointed. Yes, I realize they may be a "crutch", but doesn't a crutch help you get by until you ARE better???? I could just scream. She is on the "list" to see Dr. Grubb, but I called yesterday and they said it could be a couple months yet.

Anyone know a dr. that is willing to try different medications that is taking patients? We are in MN, but willing to travel.

Thank you!

When you call, who are you talking to, the appointment people? I would keep calling and maybe even ask to talk to the dr.'s secretary.

Also, I would ask about being a "checker" if you are desperate and have some time to kill. What that means is that you go to the floor and wait for either an opening/cancellation or to be "worked in". It can take a few days, but if you are there and willing to wait, someone will see you. They can't guarantee how long it will take, but it may be worth it. I know other areas take "checkers", I would assume they would also. Something to look into. My mother-in-law did this a few years back in ophthalmology and was there registered and seen by 11 am! She was told there were no appointments also.

Have you tried to get an appointment with Dr. Grubb? I know that is a long wait as well (as my daughter is also on that list), but if you are on a wait list, maybe being on two will get you in to see someone new faster.

Good luck!

Thanks! I do have an electrophysiologist, but he told me that he couldn't help me anymore than he has and that I should go to a pain clinic and figure out a way to manage the rest, or go back to my primary doctor. She think I'm crazy and sent my to a psychologist, so I don't really like that option. I'm not quite ready to give up yet!

It sounds like the Mayo clinic in Rochester is where it's at... hopefully I can get an appointment, they are pretty dang busy!

I sent you a message about who we see at Mayo.

Thanks for your responses. I really think she should be checked for this if nothing more than to have an answer to all her aches and pains--to be validated. She once said she didn't want to go back to the dr. because they never found anything wrong and there was nothing they could do to help her. It was very sad as a mother to hear that your child feels they have to just suffer and that there is no help for them. And, I know she is SO tired of all the dr. appointments and I hate to haul her to another specialist--especially if they don't find anything. I know we should, it just gets SO frustrating--kind of feel like you are crying wolf if you know what I mean!! I also feel like a paranoid parent sometimes, but I need to get over that.

Maybe I should email her POTS dr. and ask what he thinks?? I am sure he would do the referral, and I don't think I even need a referral to get an appointment.

Two other things that has me thinking. Tonight she was just sitting on the bed next to me and her hip popped. Her shoulders creek, grind and pop all the time as do her knees. I thought I read that it was a sign of EDS somewhere (joint instability). Also, my mother had mitral valve prolapse and died very unexpectedly at the age of 56. They said the best thing they could figure out was that it was some type of heart thing such as an arrhythmia. That kind of freaks me out with this whole thing too.

I got the numbers back, but haven't talked to the dr. Both tests were in the normal range of 70-750. Hers was 506 when lying and 306 after standing. This doesn't make sense to me. Or, could it indicate something else? Some other reaction to standing? Could the lab have messed up and got the two results mixed? Probably no big deal, but it seems a bit odd to me.

I have seen this mentioned quite a bit on this forum. I have been asked by doctors if my daughter is really flexible, but that is about as far as it has gone. She isn't generally flexible. However, after reading about EDS, it mentions dislocation or sublaxation of joints such as knees. She has had that a LOT. Also her ankles. She had her first really bad ankle sprain when she was in kindergarden. Also, she has a LOT of muscle/ligament aches and pains and some arthritis. I have even told her pediatrician I really felt she had some type of connective tissue disorder as it isn't normal for a kid that age to hurt all the time, but that is as far as it went. She agreed that there was likely "something", but until the symptmos manifested in a manner that could be diagnosed, she didn't know what to do the help. Also she has had a lot of bruising for no apparent reason--especially on her legs. She was checked for some bleeding disorders, but not by a hemotologist. I don't think she has any serious bleeding disorder, but she does bruise easily. One time we counted over 30 bruises on her legs and she had no idea why.

I guess what I am wondering is what benefit is it to be diagnosed? Is there treatment? Is a skin biopsy required? If so, where do they do that? Who diagnoses this disorder? It seems to me that it would explain part of POTS in that the blood vessels are stretchy and don't constrict properly.

Any information would be appreciated!

Recently, due to increasing neurological symptoms, my PCP recommended I travel to see the docs at Mayo who have more experience with dysautonomia than any neuro docs in town. My electrophysiologist has been the primary doc for the dysautonomia, but he is no neurologist. Also, there has never been a complete definitive dx as to what type of dysautonomia I have. They suspect PAF or AAG, are there easy tests for that? Didn't think so. I would love to know what I really have!

Anyway, I was wondering if any of you had experience at Mayo and could recommend specific docs. I've seen the list on this site, and I trust these people are competent, but I was hoping for any input you may have. I am open to going somewhere else, if its better. My EP suggested Johns Hopkins, but I can't find any info that there's anyone there that has real dysautonomia expertise.

Thanks ya'll!

Jamie

My daughter just saw a dr. at Mayo. I will send you a message.

I have to say, I think you'd need to try it for more than a few days. It took me a while to get into a rhythm with it.

I'm waiting to get back on Mestinon after pregnancy and breastfeeding. Yes, the digestive side effects are brutal (I have IBS, so constipation was NEVER my problem anyway). On the other hand, my dry eyes disappeared - I could wear contacts comfortably again! The bowel side effects did subside somewhat after a while but eventually I got on some meds to calm the digestive issues.

Ultimately it was worth it for me. It made me feel a lot better. I wish I could be on it now!!

Glad to hear you had good results--for the most part. Were you on the regular tablets or the Timespan? It seems everyone has been on the regular and I haven't heard from anyone on the Timespan.

I hope that it is helpful for your daughter. I took it for just over a month and could not stay out of the bathroom. I did not notice if it helped in other ways because it made me so sick.

Thanks for your response. That is a concern of mine as she already has inflammatory bowel disease and I hate to see anything upset that. Can you tell me, were you on the multi-dose per day such as 60 mg or the once a day Timespan? The dr. said that the Timespan has been much more gentle on the gi system. She isn't up yet this morning to see how she fared during the night. I sure hope she wasn't up all night from it.

My daughter is on the Timespan version, so it is just once a day. She took it at 6 pm last night and the only complaint from her 2-3 hours later was that she was really hot. Her skin was very warm to the touch but she wasn't feverish. Not sure if it had anything to do with the Mestinon or not. The dr. did say that this formulation had fewer side effects such as nausea. She took her dose with food to hopefully help with that as well.

Cat Lady, you mention that it seems to help with muscle pain. What kind of muscle pain have you experienced? My daughter has a lot of aches and pains. The one that we feel is really related to POTS is neck pain. It would be wonderful if it would help that and then maybe also her headaches too. And, if it can help with brainfog, that is one of her biggest complaints.

I REALLY hope this drug helps her!!

Well, after a very long day, we are done. What did we find out that we didn't know?? Not a whole lot other than her ttt results he said were actually worse than 2 years ago (and part of me feared that it would be normal!). Oh, and that she is doing a great job of sodium and fluid intake (per urine tests) and that is obviously NOT helping her symptoms much. So, the dr. tried to convince her to do a 3 day "study" of the mestinon but she didn't want to have to come back in 3 days. She did enroll in a 2 year study to try to help with prognosis. Her catecholamine test results were not back yet, but I'm not sure what that is really going to tell us or how it would impact treatment. I will ask that when we get the results.

In the meantime, we are going to try Mestinon and see if that helps her fatigue and concentration as well as continue on the metoprolol (which we found out really is helping after being off for 4 days. I am cautiously optimisitc, but more than anything happy to at least be able to try SOMETHING!!

For those of you who tried or are on Mestinon, how long before you noticed an improvement or that it wasn't working or had bad side effects?

Thanks!

Hi Kim and welcome. I also have a daughter that was dx at 15 and am sorry you had to find us in your search for answers for your daughter, but GOOD for YOU and HER!! You are being a great mom for pushing for answers for your child. My experience has been that kids aren't taken as seriously as adults and it is our job to advocate for them. This site is a WONDERFUL source of information and support. I have learned so much from everyone here and am so grateful.

To answer one of your questions: a 24 hour urine is just a simple collection of all the output in 24 hours into a large container--no catheterizataion. My daughter just had one of those done and believe me, if it did there is NO way I would have convinced her to do it. She thought it was bad enough to have to pee in a cup for a day! She just hates that. Oh, and another one of her major complaints--putting on a hospital gown! She'd rather have her blood drawn or an IV any day. Teenagers!

I sent you a message also.

Good luck to you in the quest for help and answers!

It may sound weird, but I am SO glad that you guys can exercise and still have POTS symptoms. Not that I wish it on my worst enemy, but my daughter is the same way. There was a time when she could hardly get out of bed, but now she can play volleyball for a while and do quite well. She suffers TERRIBLE fatigue for a couple days afterward, but for her it is worth it. She too, seems to do better moving than just sitting or standing. But, her stamina wears out and she is a limp noodle by the days end. She is in no way out of shape. I guess what I really mean to say is that you guys can relate and understand that because like one of you said, you can barely stand to make dinner, but can run. I honestly believe that there aren't many people that can REALLY understand that.

I was in fact, kind of leary to post my question about metoprolol and that she was actually playing volleyball. I know so many would LOVE to be able to do something that involves that kind of activity but are limited by POTS (she was also before) and was afraid you might think she is being a whiner if she can play volleyball and that her POTS isn't that bad. But, her biggest complaint right now is lack of concentration and dizziness. She says she can fight the fatigue, which is bad, but the concentration and dizziness are a different beast.

I have to wonder if it is the surge of epi and norepi that many POTS people experience. Maybe it feels better to "wear" some of that off by moving around rather than have it all built up in the bloodstream?? Like having a jittery nervous feeling and it feels better to run or exercise. Just trying to make sense out of something that seems to not make sense.

My daughter stopped taking her metoprolol after Wednesday because she had another ttt on Friday and the dr. wanted her off the day of and the day before. At first, she dind't think it really did anything as she felt the same on Friday. BUT, on Saturday she said she felt terrible and thought she was going to pass out. Then, today she played volleyball--nothing stops her! and she was in tears after a while. She said she hasn't felt so badly in a VERY long time. So, we are thinking that the metoprolol WAS helping quite a bit, but would it really take that long to get out of her system??

She did take another dose today in hopes of feeling better. I think it helped a tiny bit, but she is absolutely exhausted (8 pm and in bed) and feels "like crap" to quote a 17 year old . She will have the endocrine test where they do the tilt and 2 blood draws to check epi or norepi--can never remember which or both tomorrow morning. But, her dr. said that he preferred she be off, but if it was too difficult, she could take it. We decided it was worth a try to help her feel better today as their team was in the championship and she is a very key player and she didn't want to let her team down. I hope it doesn't skew the test results too much. BUT, if she felt pretty good on Friday, it also has me curious what the ttt result will be.

Do you think that metoprolol could really stay built up in her system like that??

Thanks all! By the way, they won the championship by the slimmest margin and she did well (although I was wondering at what point I was going to have to go pick her up off the floor-she looked terrible as eveyone else noticed too). She is a fighter and determined not to let this take control of her-for that I am proud. It is just hard as a mother to see her have to struggle so much and all her friends can go go go!

My son is another one with pandysautonomia and Crohn's disease, but low CRP and sed rates. The doctors all assume that his conditions are caused by inflammation, but those markers rarely are elevated. I think, like so many other tests, they must be underinclusive.

Antibiotics are such a double-edged sword. They're life saving in many circumstances, and they sometimes have helped patients with Crohn's and many other inflammatory diseases. But they can also cause neuropathy, which in turn can produce autonomic problems. My son's neurologist has marked his chart so that he will not receive metronidazole (flagyl) again. He's had that several times after bowel surgery or intestinal infections, but it has caused autonomic neuropathy in some IBD patients. So the neurologist felt it wasn't worth the risk--although my son can take other antibiotics as necessary.

Spaceorca, I am curious, what exactly are the symptoms of autonomic neuropathy? And, is it an immediate side effect of flagyl?

I guess I better ask the doctor!! Thanks for your responses!! Personally, the thought of a jug of urine sitting at room temperature for 24 hours is NOT very appealing to me. Not that keeping it in my refrigerator is either, though!! But, I'd rather have an accurate test!