Frustrated By Pots

[bkweavers]

I have some more questions concerning my 11 yr. old daughter and the meds she is on. Back in August, my daughter was only on Pindolol, a beta blocker. She takes 1 5mg in am and 1/2 tablet in pm. Then, about halfway thru Aug., they decided to try Florinef with her again. They had tried it before she was on the beta blocker and it made her feel worse. They wanted to see how she would do on Florinef with the beta blocker. (she is on 1/2 tab of .1mg Florinef) As if her dizziness and the way she walks wasn't bad enough, about 3 weeks after being on Florinef, she became more dizzy and the way she walks got much worse. At the time, we thought that maybe the start of school (she goes half days) had been a stresser on her body and that's why she was more dizzy. Now, when I looked back in a journal I keep, I wonder if the Florinef is the cluprit.

Now, after coming back from Children's in Milw., she is on another med, Lorazepam in the hopes that it will help her dizziness. She is on all of these meds and so far, nothing has really helped the constant dizziness and she is actually worse since August. Children's Hospital told us to slowly get her moving thru physical therapy and walking which we have started. They also want her to see a psychologist specializing in biofeedback because of the anxiety she gets when she does have to sit or stand. We are willing to try all of these things but if the Florinef may be making her worse, I'd like to get her off of it asap. I have been on this website nonstop lately and have read thru many topics about Florinef. The thing is, I haven't run across anyone yet who seems to have the extreme dizziness that my child has. She is dizzy all of the time. She explains it as she is spinning and not the room. She basically spends her time reclined and can do very little at this point. I hear a lot about fainting and dizziness at times, but no one who is dizzy all of the time. We are now going on 8 months of this and I wish so badly that something would give her some relief!

I hope I haven't sounded like no one else on this forum is suffering like my daughter. It's just that some of the things she's going thru, don't sound quite the same as other people. Is it maybe because she's an adolescent going thru puberty instead of an adult? I continue to wonder what the doctors are missing even though we've been told that there are no other tests to be run on her.

Please - any suggestion or comment is much appreciated. As you can probably tell from this note - I'm having one of those bad days where it seems like this will never get better! I want to see my child get some relief from her dizziness!

Thanks in advance for your help!

Brenda

[Angelika_23]

Hi Brenda,

I can't say that the Florinef made me dizzy, but I do think that I had a bad reaction to it. I have been on a 1/2 tab for 4 mos or so, and then my EP cardio upped it to 1 tab. For about 5 days following the increased dose, I did pretty well. Then day 6 hit. Not good. I started with almost constant unsteadiness and fainting, and for added fun, tachycardia in the 130's while at rest. At first, I didn't realize what was going on, and thought I was going through a "crash". Then I remembered the increased Florinef, and dropped back to my half a pill. The symptoms have abated.

The only reason I can think this happened is that I do react badly to oral steroids, and I think Florinef falls in that category. The odd thing is, it doesn't seem to affect me until a certain level is reached in my body.

I hope you find the answers you need to help your daughter feel better.

Angela

[juliegee]

Hi Brenda,

Wow, this sure sounds alot more like vertigo than the lightheadedness caused by POTS. Vertigo is when you feel like the room is spinning. It happened to me once and was awful. It only lasted a few moments, but I fell to the floor. I found it impossible to stand. Your poor daughter is trying to attend school like that???? Vertigo is usually a problem of the inner ear. I looked up florinef's side effects and, sure enough, vertigo is right there. I'd contact her doctor immediately and get her offthe florinef to see if that helps. This spinning does not sound like a typical POTS symptom to me. (If the vertigo stops, then she can cut out the Lorazepam too. Talk to her doc ASAP!)

The anxiety may partly be a result of the problem she's having standing with the vertigo OR it could be a part of POTS. My son also has dysautonomia. His BP drops unexpectedly throughout the day. He's also on florinef, etc. Prior to a BP drop, he began experiencing extreme anxiety. His doctor explained that Mack's body instinctively knew his BP was anout to drop and spontaneously began to flood him with adrenalin to counteract the plunging BP. Mack started taing Lexapro, an antidepressant, to help with this. It made a huge difference.

My son's symptoms also started at puberty. he went through a huge growth spurt, like 5 inches, during the year that he was the sickest. Mack had been an almost straight A student, an athlete, etc. Suddenly, he could barely get out of bed. The hardest decision I ever made was ro pull him out of school. But, it was the BEST decision ever. He was able to sleep in, focus on trying to eat healing, healthy food, do daily PT, work on school stuff when he felt his strongest. I devoted that whole year to healing him. It's OK to pull her out of school for awhile. She needs to get her meds/symptoms under control before she should try to attend school. Just one Mom's advice.

BTW, my son is sooooo much better. He still takes lots of daily meds and is more tired than his friends, but he can attend school full-time, and is back to skateboarding and playing his guitar, etc. Your daughter is young and resiliant. Keep on advocating for her. She will get better!

Hugs to you both-

Julie

Edited December 1, 2007 by flop
Quotation removed

[exhaustedcollegestudent]

I can only speak from my own experiences, and I have not met anyone else with POTS personally, so I hardly can compare . . .

But, I went through POTS while going through puberty back in middle school/high school, and I never felt dizzy all the time. I would have "spells" while at gym classes, walking long distances, standing for a bit of time, or when I felt over-heated . . . all of which still exist, but for me the dizzy spells were more frequent for me at that age.

As I've been told on here, you have to push for what you want . . . so if you don't think enough is being done push harder and harder. You always hear those stories about people knowing something was wrong with them, and feeling as if the answers they were given were not good enough, so they kept looking for someone else to give them a better answer. POTS is rather flighty in diagnosis, because it is a syndrome, so many times there can be other diagnosis connected on top of it, plus everyone handles it a bit differently.

I wish your daughter all the best.

Sincerely,

Adrienne

[biatecki]

Hi Brenda

I do feel for your daughter ..I too had extreme dizziness as one of my POTS symptoms .. .it was 24 /7 and did not at that time seem to be related to low blood pressure, cerebral hypoperfusion or any change in position.

I was unable to walk around without hanging onto someone (or the wall) ,couldnt turn my head or even read without extra waves of dizziness and nausea . I was given the usual drugs for dizziness...valium, sert, with no help at all .

I was convinced it was Vestibular in origin although testing (EMG) was negative. I persisted and eventually did get a lot of relief from Vestibular Rehab.

This is done by specially trained PTs. It takes several weeks and works better if you avoid the "dizzy meds " I am sure your daughters PT will be able to refer you to someone.

Seven years later I still experience dizziness on a daily basis but it is much milder and more related to cerebral hypoperfusion than vestibular dizziness . There is a difference . I have taken Florinef for about 2 years now with no problems ..in fact that and Midodrine really help my present "dizzyness "

Hope this helps ,

Margaret

[SchneiderK5]

Hello Brenda,

My daughter experiences dizziness all the time - for the last 4 yrs. All the time. Yes - that does happen. She is not alone. There are many other children also. This is not for lack of qualified help or attempts to alleviate or reduce the symptom. It happens. It is beyond frustrating. It MAY also go away, and I am waiting for that day.

I know where your questions are coming from - I have been there. Part of me is still there. I?m going to try to respond to what you have mentioned. This note may seem scattered in response.

An important thing to know with POTS is that your child?s body can be considered to be behaving hyper-sensitively. Stressors can occur which can impact her immediately OR have a delayed reaction. Responses to stressors may seem to be exaggerated. Stressors can have a cumulative impact. It can be very difficult to accurately identify what triggered what when - even if you keep a journal.

Particularly with medicines, it can take a while for the body to adjust/accommodate the medicine. Sometimes you have to ?wait it out? to allow time for relief. (I will not lie - this is very hard to do.) Every time a change occurs, her body needs time to adjust. If too many changes are made too quickly, it can be impossible to judge the effecicacy of a medicine. It takes an experienced doctor to navigate this situation. Each person will respond differently. Children will respond differently than adults (allow me to emphasize that, please).

For many people, my daughter included, seasonal changes are a dominant factor in symptom presence and severity. Barometric pressure changes can have a profound impact on how they feel. Approaching storm fronts can make them feel worse. My daughter feels worse in winter and better in summer, and spring and fall are transitional times. Unfortunately, this coincides with school schedules.

School and its requirements can be a huge stressor. I am amazed to hear that your daughter is attending half days in her dizzy state. Has the school established parameters to secure her safety? This is actually an enormous topic unto itself. I do not know enough about your daughter?s situation. I can tell you that many children with POTS receive home-bound services. It allows them time to heal/recover and is more effective for them to apply their limited energy to learning.

Puberty may be a big factor in what your daughter is experiencing right now. The shifting hormone levels represent changes - and those ever-shifting changes are causing havoc.

Regarding the ?anxiety? your daughter is experiencing when she has to sit or stand. I am a bit concerned with this wording - or perhaps the way your physician has described this. In all likelihood, when your daughter is sitting or standing for any period of time (this can be seconds/minutes) her blood is ?pooling? (meaning: not circulating adequately to supply the body with proper oxygen - this will cause physical discomfort). When that occurs, her heart goes into overdrive to get the blood pumping ?normally?. Her heartrate/blood pressure may be cycling between rounds of too high/too low. All those changes and accommodations make kids (and adults) with POTS feel ... sick. It is normal to want to avoid what causes one to feel ill. Being in a position - such as a classroom - where you cannot move to help yourself feel better will cause anxiety. Your daughter is experiencing Physical manifestations of discomfort caused by POTS. Eliminate the circumstance causing the problem, eliminate the ?anxiety?.

I would not want anyone treating my daughter for anything (including the common cold) who did not have a comprehension of the manifestations of POTS and its symptoms and its implications on general health. Likely as not, at some point your pediatrician/family doctor will do well to consult with a POTS specialist to gain a basic understanding of the implications of POTS.

Regarding Physical Therapy: Once again I am disadvantaged with lack of detail about your daughter?s circumstance. I would just like to express a note of caution. Physical conditioning or re-conditioning are important. A fit body will better deal with POTS symptoms. We all know that walking is good exercise. However, aerobic exercise also raises heart rate - a change for the body to deal with. Just as in the case with medicine, it takes an experienced POTS doctor to guide you regarding exercise. Inappropriate exercise could also be exacerbating her symptoms.

My daughter also takes Florinef. I have also read the details regarding this medication as well as all the others. To a lay person such as myself, the words are frightening. I could easily talk myself out of all the meds. I hated putting those meds into my young child?s body. However, I have learned to respect what they can accomplish when appropriately administered.

More tests may not be what your daughter needs. (Note: the tests are also stressors.) The most important thing that an experienced POTS (dysautonomia) specialist does is LISTEN to your daughter and you. There are many factors to consider - many of which less-experienced physicians could not know about. A specialist can help you distill the information. Your daughter?s case of POTS is unique - because they all are. There is no magic pill. In many cases the medicines can diminish the severity of symptoms.

Sometimes with POTS, you just need to back up, slow down and allow everything to kind of settle into place - kind of like allowing a scale to stop swinging back forth and up and down and allow it to BALANCE out. Your daughter may now have a new ?balance-point? which you will need to locate, establish, recognize and attempt to achieve. I know that might sound peculiar - but chances are that at some point it will make sense.

If you feel like your doctors are missing something - you?re probably right.

I?d like to share with you some advice I received when my daughter was early in her diagnosis. It is important that your daughter still have time to be an 11-yr. old child. Much of their time is spent feeling poorly and going to doctors. More time is spent catching up on schoolwork. Friendships are interrupted. Allow her time to rest. Rest is very healing. Relaxation can be the best thing.

Even for ?old-timers? dysautonomia is frustrating. However, your questions and concerns are indicative to me that your daughter is not receiving care from an experienced source. I encourage you to seek a more expert physician. That doctor may or may not be able to offer you the tools that will return your daughter?s state of health back to what it was before these symptoms began. That may take time. However, a better understanding of the circumstance may help your daughter and you make adjustments to creating a life which will feel more comfortable than the frustrating state you now describe.

It takes a lot of energy to do all you are doing now for your daughter. I applaud your tenacity. Keep up the good work.

Best wishes,

Gail

[Miriam Poorman-Knox]

Gael hit it on the head. The only thing I might throw in the mix is the possibility if using a anti-nausea patch. This may help make it more bearable. Also just movement walking around the house is good to do many times a day. Perhaps she can do some upper body and leg exercises from her chair. Hard to visualize but helpful. Miriam

[sally]

Hi Brenda,

Hope your daughter feels better very soon....that's a horrible thing to deal with.

It still sounds like benign positional vertigo to me with the dizziness or some type of inner ear thing going on. I take it the doctors have evaluated her for this problem or given her a mri to make sure things are okay otherwise.

Has she tried Midodrine? We use this and have had good results with this medication with little or no side effects just benefits.

i sent you a IM after the first time you posted, i'm not sure if you rec it or not.

good luck and best wishes sent to you.

[SchneiderK5]

Hi Brenda,

This is a link for a brochure entitled "Your Child is Diagnosed with a Dysautonomia Condition". It is one of several which are very helpful.

http://www.dynakids.org/Documents/Your_Chi...a_Condition.pdf

Just in case you are feeling overwhelmed by the circumstance, inundated with information(or the opposite - not enough information) and even confused - don't worry. Things will sort out. I think it is a normal experience for us parents to have to 'find the right path' for help for our children with dysautonomia diagnoses. There is help. You just need to get to the right people. You are getting good advice here, and you are on your way.

Gail.

[SchneiderK5]

Hi Brenda - just checking - how is your daughter doing? And - how are you?

Gail

[bkweavers]

Hi Brenda - just checking - how is your daughter doing? And - how are you?

Gail

Hi Gail!

Thanks for asking about us! I couldn't get on this forum for a couple of weeks so I'm glad to be back! Something was either wrong with my computer- who knows? Anyway, we are hanging in there. We have had a couple of difficult weeks with everyone in my family getting sick! First, my husband a cold and then my 6 yr. old had a ear infection and then I had a cold for over 2 weeks. Then Liz (who suffers from POTS) got an ear infection and a cold. She ended up being home from school for 2 weeks and just feeling lousy. She's finally feeling a little better and hopefully, we can get her stronger again. Nothing new on the subject of meds or doctors. My husband and I are going to start working on getting some appts. to maybe Mayo and Dr. Grubb in Ohio. We still are convinced that something else is going on with her. I can just feel it in my gut.

Brenda

[Lenna]

Hi Brenda,

Is your daughter still on Florinef? How's that going? My son is on .1 mg of Florinef 1x/day. My gut feeling is that it's not helping, maybe even making him worse, but I can't be sure. He seems to be dizzier since we upped the dosage from 1/2 pill to a full pill.

-Lenna

[runningshoe]

Hi

You got some great advice from the folks who posted and I hope that your daughter has more good days than bad. I have kids so I know how hard it is when you can't make them feel better. I don't have much to add except that Lorazepam is an anti anxiety drug. I don't know how it effects dizziness. I do know (after just weaning myself off of it) that it is a lifesaver in times of extreme anxiety but it is not good for long term use. I was only taking .5 once a day and it was a tremendous help as I dealt with some tough times. However, I feel so much brighter and alert now that I am off of it. Occasional use or temporary use is ok. I also agree that when you have pots everything your body experiences is amplified by the pots. Getting sick, school worries, new meds etc. will have a strong impact and you do need to give her time to balance out.

Sending healing wishes!