Anyone Feel "normal" When They Find The Right Drugs?

[Aquadiva]

I am just wondering how many people can feel like themselves again with the right drug or combination of drugs. I am having a hard time watching my daughter be miserable when I think there HAS to be something out there that can help her. We thought the metoprolol was helping, but not really sure and certainly not very well. It has only been 10 days, so maybe we just have to be more patient!

It bothers me when the dr.'s say that no matter HOW bad you feel, you still need to go to school and function like normal. Sure wish any doctor that gave advice on a disorder could experience the disorder personally!! And, that you should just learn to deal with the fatigue, dizziness, and brain fog!

I think I am at the angry phase!

[Notgivinup]

I felt pretty close to normal for about 10 days in a row back in Oct.

I "thought" I had found the right combo of meds. for me. Alas it didn't last. I'll never know why it worked for those days. It's truly a mystery condition. The body seems to be constantly changing. (At least mine).

It is possible, just keep reading, researching, have her listen to her body. Use your instinct as to what is right or wrong for her.

And never let doctors bully her into thinking she should just get on with life. This can be a miserable illness. Mentally torturing, and physically.

[tinkerbella]

I am just wondering how many people can feel like themselves again with the right drug or combination of drugs. I am having a hard time watching my daughter be miserable when I think there HAS to be something out there that can help her. We thought the metoprolol was helping, but not really sure and certainly not very well. It has only been 10 days, so maybe we just have to be more patient!

It bothers me when the dr.'s say that no matter HOW bad you feel, you still need to go to school and function like normal. Sure wish any doctor that gave advice on a disorder could experience the disorder personally!! And, that you should just learn to deal with the fatigue, dizziness, and brain fog!

I think I am at the angry phase!

Aquadiva,

I hear you loud and clear... I have a child who is ill, but worse of than we are. It is heartbreaking to have anything happen to our children. I pray that your child will get better soon. Pots is not easy, and we all get angry at times. but most angry is fear based. Learn as much as you can. Let knowledge be your foundation and take it from there. If something isn't working tell the doctor and have the doc switch it. Your the mom use your mom intuition and help speak for your child.

The only normal I feel is "abbynormal" and I know that is not even funny. I'm almost allergic to everything they put me on. So how old is your daughter because my doctor told me that most of his patients do feel better. That I'm his worst or most complicated and I think most of us her are the ones who are having the hardest times or we would be outsides enjoying the beautiful weather, at least I would.

Also a few other things besides the meds, is she drinking lots of fluids, Gatorade, taking in salt the recommended amount your doc suggested for her a day.

I wish you the best. I don't know if you are new or not but the "changes" DVD is very good source of learning information for sale here.

Also when in doubt check it out. Make another appointment to see the doc and tell him or her what is going on. I will say a prayer right now for you and your child. May you let go of the anger and take charge of the situation and I hope she feels better soon.

xxx's

bellamia~

[Aquadiva]

I am just wondering how many people can feel like themselves again with the right drug or combination of drugs. I am having a hard time watching my daughter be miserable when I think there HAS to be something out there that can help her. We thought the metoprolol was helping, but not really sure and certainly not very well. It has only been 10 days, so maybe we just have to be more patient!

It bothers me when the dr.'s say that no matter HOW bad you feel, you still need to go to school and function like normal. Sure wish any doctor that gave advice on a disorder could experience the disorder personally!! And, that you should just learn to deal with the fatigue, dizziness, and brain fog!

I think I am at the angry phase!

Aquadiva,

I hear you loud and clear... I have a child who is ill, but worse of than we are. It is heartbreaking to have anything happen to our children. I pray that your child will get better soon. Pots is not easy, and we all get angry at times. but most angry is fear based. Learn as much as you can. Let knowledge be your foundation and take it from there. If something isn't working tell the doctor and have the doc switch it. Your the mom use your mom intuition and help speak for your child.

The only normal I feel is "abbynormal" and I know that is not even funny. I'm almost allergic to everything they put me on. So how old is your daughter because my doctor told me that most of his patients do feel better. That I'm his worst or most complicated and I think most of us her are the ones who are having the hardest times or we would be outsides enjoying the beautiful weather, at least I would.

Also a few other things besides the meds, is she drinking lots of fluids, Gatorade, taking in salt the recommended amount your doc suggested for her a day.

I wish you the best. I don't know if you are new or not but the "changes" DVD is very good source of learning information for sale here.

Also when in doubt check it out. Make another appointment to see the doc and tell him or her what is going on. I will say a prayer right now for you and your child. May you let go of the anger and take charge of the situation and I hope she feels better soon.

xxx's

bellamia~

Thanks. My daughter is 17. She had it 2 years ago, and the only drug she was on was metoprolol. In a few months, she was doing really well. She would have minor ups and downs over tha past 2 years but nothing like this. I think you are right, it is fear. I fear that she will NOT outgrow this like we had hoped. But, the dr.'s are even more frustrating than the disease I think. And, she does listen to what they say and does what they say, so it isn't that. I just think that they are too quick to just say, "bum deal, this is your life, get used to it." Well, not really, but you know what I mean.

Yes, I think she is getting enough sodium. We counted for lunch and lunch alone was 2000 mg. Dinner will be at least 1300 mg. She is getting plenty of fluid. She had popcorn, pretzels, and I will try to get her to have a 600 mg bagel before bed. We are very good at reading labels and making sure everything is high in sodium that can be. Boy, people look at us weird when we go to a restaurant and ask what would have the MOST sodium! lol She was also exercising almost every day, but not today, she is feeling so badly she can barely walk. I'm still working on getting her to take a short walk with me. I don't know what triggered it this time, but the first time it was a medical procedure under anesthesia, we think.

I am fortunate that she is generally a very positive and compliant person. If she was negative and non-compliant, I don't know what I would do! Guess we have to be thankful for what we can be thankful for!

[Simmy]

The good news is teenagers seem to recover from this much faster than others so don't despair. I've been on a variety of meds for about 18 months now and I think my doctor and I have made progress towards finding the right combination.

My wife and I are used to the weird stares and we laugh about how strange I look when we're in public. Last week we were shopping in BJ's when I couldn't walk or stand anymore so we got to the food counter, I grabbed a few packets of salt and while squatting I poured them into my mouth and washed it down with some water. Five minutes later I was able to get up and walk to the car. People stare, the nice ones ask if I'm OK or if they can help and I thank and reassure them, but mostly my wife and I look at people's reactions so we can laugh about it later. Life happens, I try to make the best of it.

[tinkerbella]

There is nothing to fear but fear it's self.....

Sweet one she is just 17 She has the best chance of all. Try to think positive... Try not to be a nervous nellie about it.If she sees you upset it is going to make her upset and that makes pots worse. Also any infections, normal stress being 17 can't be easy. I'm sorry now I was more relaxed about my son's illness, plus add on a divorce and wish I could relive part one of my life all over again, but it doesn't work that way. I just get to pass on my experience down to you and hope it helps. I know it's not easy... I don't know who cares for your daughter, but you have to find a doc that you trust and maybe a neuro and a cardio along with your PC.

Once again if I can be of any help or someone to vent to I'm just a click of the keyboard away.

Blessings to you and your daughter~

(((((((HUGS))))))))

BellaMia~*

I should go and pack for my day long at hydration at the infusion clinic tomorrow. I go two days a week. ; ) cause meds and I don't mix that well.

[bkweavers]

If your daughter continues to feel miserable, she should not have to continue to go to school like that. When my daughter became ill, we put her in special ed and she only went to school for 3 hours each day. Now, she's there 5 hours and is better than 3 years ago but many kids with POTS have a 504 plan or are homeschooled because they just can't handle school. If she continues like this, the school may have to modify for her and believe me, it will take so much stress off of you!

It sounds like you need a doctor more willing to try some new medications and fight to get your daughter feeling better. Teens with POTS do go through some bad times especially at this time of year but she should not have a doctor telling her to just "put up with it." Her doctor should be telling her to take care of herself right now so she can get past this bad time. Grin and bear it is not very compassionate!

I hope and pray there are better days ahead for your daughter and all of our kids with POTS. I for one can not wait for the day when I just see my daughter sit up on her own!

Brenda

[tinkerbella]

Brenda,

You made such a good point. When my son was at home with me I forgot about the home school and the school planning. Once again best of luck. Thank Goodness we can come here and all put out heads together and figure things out.

Bellamia~*

[Christy_D]

Time for a new doctor. My son has not gone to school in over a year, and his doctors completely understand, as does his school. He is on homebound schooling, they send a teacher to our house for his English and Math class. Then he takes the rest of his classes on line. Most of his schoolwork is done in the evenings since he is sickest in the morning thru afternoons.

We have yet to find the right drug for him, although he has relief from many of his symptoms on his current meds, but we can't get rid of the nausea. He was on Toprol but it brought his heart rate down to 46, so even though he was feeling better, he was mentally checked out. He slept all of the time and his grades dropped because he wasn't functioning mentally.

[janiedelite]

Oddly enough, I have actually felt "nearly normal" after starting midodrine, mestinon, and something else I can't remember. But that only lasts for a couple of days at most and then I get wierd side effects.

I do feel a bit better with my current meds, but my doc still understands that I'm too ill to work and supports me in getting disability. I'm sorry her doc is so narrow-minded. My husband is a Special Ed teacher who said she could probably be found eligible under "Other Health Impaired" or get on a 504 plan which would open up funds to get her tutors outside of school. But these findings might also affect her diploma status.

[Christy_D]

My son has yet to go to school a single day of his freshman year. His counselor said, with the homebound teachers and the on line classes he is taking, he will be able to participate in his schools graduation when the time comes. He has a 504 plan that the school initiated with me. They informed me of all the help we were eligible to receive because of his illness.

Make sure your school steps up and provides you with all the help you need. Last year, when my son was in 8th grade he received homebound while he was attending school. For every day he missed, they gave us 1 hour of homebound help. It kind of worked as a tutor to help him stay caught up and give him instruction where he needed it.

The 504 plan does require your doctor to fill out a portion of the form, so he needs to be on board.

[Aquadiva]

Actually, school hasn't been the issue, we fought that battle and won. She has an IEP because of her 2 health conditions. She is a straight A student, so I had to fight REALLY hard to get it, but we did. And, each year I have to fight again. I'm not so sure I will fight for it next year as I don't even know if she will be going to the high school more than 1 hour a day. In the past, when she isn't well enough to go to school, she isn't well enough to do anything, so homebound hasn't worked for us. The teachers have been great. She got reduced assignments with extended due dates. Even her college instructors have been very accomodating. The school also let her take one semester of math and a whole year of history online so that she could make up her math she missed (she was out a whole semester) as well as have a later start time for the year. The classes she did and made up online were meant for students who didn't pass a course to get a passing grade and credit. It was very easy and quick, and we didn't feel her missing out on a year of history was going to make or break her education. And besides, she still got the "condensed" version. Also, when she missed so much school, they let her do a P/F grade so it wouldn't affect her GPA. Now she is doing college classes and only goes to the high school for 3 classes from 12:30-3. It has been SO helpful for her to not have to get going so early every morning. She goes to the community college 2 days a week from 10-11 and takes 2 college courses online. It is a fantastic opportunity for her as she gets both high school and college credit. She wants to go to med school, so the little jump start will definitely help! (not to mention it is FREE)

The dr. says that the only excuse to miss school is a fever, vomiting or diarrhea. Guess it doesn't matter if you can't walk between classes, hold you head up or focus on anything. I understand the push to be as "normal" as you can be, but sometimes you just can't. She is a real fighter, she hasn't missed any days of school yet this year because of her medical issues. However, she was so bad one day this weekend, that she could not have made it out of the house to go to school. She loves school and hates to miss it. That maybe is the hardest part, I don't think that the dr.'s always believe that they really WANT to go to school, just CAN'T. I will continue to fight for her, but it is getting interesting with her age. They want her to become more independent and involved in her health care, and I honestly think you lose credibility as a parent. The good news is that she wants me to be involved with her care, so at least I'm not fighting her!

Only 6 more months to a year before she can see Dr. Grubb!!! (she currently goes to a very large medical center that is known for POTS treatment, but I just think the dr.'s are too reluctant to prescribe medications to teens and push to just work through it all without it--which is great, if you can, but we would rather try medications to help instead of living life miserably)

[Lenna]

One thing that my son has in common with your daughter is, if he's too sick to go to school, he's too sick to do work at home as well. We tried home tutors the first year he was sick and we had to keep canceling at the last minute. It just didn't work. Online courses are great for him because he can log in whenever he's feeling up to it.

My son has a 504 plan. Next year he hopes to take one or two classes at a nearby college to supplement what he's doing in high school and online. I need to find out if they will give allow him the same accommodations that his 504 plan requires. Aquadiva, how flexible are the college professors in dealing with your daughter's challenges? Do they give her extra time for assignments, any special accommodations with test-taking, etc.?

[Aquadiva]

One thing that my son has in common with your daughter is, if he's too sick to go to school, he's too sick to do work at home as well. We tried home tutors the first year he was sick and we had to keep canceling at the last minute. It just didn't work. Online courses are great for him because he can log in whenever he's feeling up to it.

My son has a 504 plan. Next year he hopes to take one or two classes at a nearby college to supplement what he's doing in high school and online. I need to find out if they will give allow him the same accommodations that his 504 plan requires. Aquadiva, how flexible are the college professors in dealing with your daughter's challenges? Do they give her extra time for assignments, any special accommodations with test-taking, etc.?

So far, all the college instructors have been great. Howeer, we met with the disabilities counselor at the college, and he said there really wasn't anything he could do as far as assignments, it would be up to the individual teachers. She had a note from her dr as well as a copy of her IEP, and the counselor did do one accomodation and that is that she gets to sign up for classes before they open to the general student population. That way, she can avoid early morning classes and get first pick of the options. There is also the option of withdrawing from a class for a medical reason. Hopefully we won't need to use that option as it then doesn't get any credit and she needs these college credits to count toward her high school graduation. Also, it is not allowed that a parent communicate with the college, it has to be either the student or the high school counselor contacting the college PSEO counselor. My daughter has just emailed the instructors explaining her situation, offering to get a dr.'s note, mentioning working with the disabilities counselor at the college, and it has been no problem what-so-ever. As most of her college tests are online right now, there hasn't been any issues with test taking. She did take the ACT last month, and did fine, but that was before the POTS crash. You can get accomodations for that, but it looked quite involved, so I opted to just take our chances, and it was okay.

[mountain girl]

I am glad your daughter has you to advocate for her. I first saw a local cardio who at least could diagnose me, but did not have many pts with pots so not much experience, then I asked for a referral to a larger hospital center where they treat more pots pts. After several visits, I decided to look for a dr who really understands pots pts and wants to help us. I travel from Va. to Pa. which is about a six hour trip to see a dr but he has been worth it. My point is, if you and your daughter do not feel this dr is experienced in pots, keep looking for someone who is. This website (dinet) has a dr list and that helped me. I am much older than your daughter and have had pots 2 years, but have slowly improved. At first, I rarely felt normal, then I would notice sometimes I would feel normal for a short time out of the day, usually in the morning when I felt most rested. Sometimes I would have a few "good" days, and think I was "cured", but was not. Now I "know" just to try and enjoy the "good" hours or days. I am still on meds. and do not always feel "normal" but better. I think 10 days is enough to know if a med is helping. For me I knew in a few days, or sometimes the first day if it made me feel worse. As you have probably read, teens tend to have a very good chance for recovery, so hang in there. Your daughter is the best judge as to what she can tolerate. I kept trying to exercise, but found that short walks in my neighborhood or around the mall was all I could do. If I did too much I felt "hungover" the next day. Hopefully you and your daughter can learn as you go what she can tolerate. Good luck to you both.