teenagers with POTS

[beala]

My 17 year old has pots and we have yet to find anything that has made him feel better. We have seen two Dr's at Mayo. Tried two beta-blockers, promatine, mestinon, salt, gatorade, light resitance training, elevated the head of his bed all with no help in any of his symptoms. The one symptom he would like to see some help with is brain fog. We do have a Appt. with Dr. Grubb in August but this seems so far away. Hoping that maybe he can enjoy his senior year like most teens should. Any thoughts or suggestions would be helpful ~ Tis very hard to see your child at such a young age struggle.

thank you ~

[ethansmom]

Hi! I think I responded to your post of NDRF board, but I just wanted to let you know I'm still thinking about you guys- I was diagnosed when I was 19 so I understand how tough it is to be young and going through this mess- but it does get easier with time, and once he is out of high school it will make a huge difference. I was sick a lot during those years before I was diagnosed, but found a lot more flexibility with classes, etc... once I was out of high school and into college. I hope your appt. with Grubb gets you all some answers!

[briarrose]

Beala

I?m sorry that you have to deal with this. Thank goodness you have a diagnosis. I?m not sure what symptoms your son has or what information you have already found.

Based on my own experience I can say the following:

My first 2 beta-blockers made my symptoms worse. It was my 3rd beta-blocker that was great for nearly a year. I?m on my 4th or 5th beta-blocker now. It?s trial in error with meds. It?s always good to start at a low dosage as many of us are medication sensitive or intolerant.

Have you tried an SSRI uptake inhibitor? Is your son anemic? That is very important to check. Make sure he gets plenty of fluids and sodium. Plenty of rest, being tired brings on a domino effect of symptoms including making the brain fog worse.

I can recommend a few good articles to read and I really enjoyed Dr. Grubb, he has given me back some quality of life.

http://home.att.net/~potsweb/POTS.html

http://www.dynakids.org/othersites.jsp

[beala]

Thank you both, never thought I would be wishing my summer to go by fast. Dr. Low did want my son to try paxil but not sure we would like to try that at this point, most people gain so much weight and it is so difficult to get off of, and they never seem to talk about that. We have only tried two beta-blockers and Dr. Low said that he had no more suggestions for us after tring those and mestoin. Can't wait till August. Has anyone heard of boys in their teens getting better around there second year or is this a myth ?

[luckygoat3]

hi, you might want to check out www.dynakids.org, that is a website devoted to kids and young adults with dysautonomia.

susie

dyna member

[migraine]

Oh, I really feel for your child. Though undiagnosed, I had POTS as a child and teenager. Puberty was awful. My junior year, I skipped 23 days of school. When I was finally caught, my school and Mother asked me what I was doing on these days...."Sleeping!" I ended up in detention the rest of the year, but no one took this problem seriously. I went from a 3.7 GPA to failing half of my classes that year and getting kicked off my soccer team. I'm sure I was viewed as a slacker. I think things would be different now...

I have mentioned a few times on this forum that since we do have a disease we really need to take advantage of the programs that are being offered in our schools and colleges. Your child should be able to get assistance through their school with an advisor and a proper IEP (or is it EAP) program. This lets the school better teach your child for their condition.

In my case it probably would have been better if I was able to sleep in in the morning (missing study hall or something like that) and then filling my day with classes with maybe an afternoon study hall. Teachers should also know that water should be allowed in the classroom for this student and that a possible afternoon snack might benefit as well.

I have other symptoms now, but nothing was as hard as having this while going through puberty. I encourage you to use the school program to help with your child's symptoms. Best of luck.

[ethansmom]

Migraine-

Wow- your story sounds like mine- very similar. I was sick a lot during high school (mostly junior and senior year) but mine was primarily gut related- I had severe stomach upset and diarrhea almost daily, which was my first main sign that something was seriously wrong with me, and no doctors could find out what it was. I missed a lot of school, and because I had a boyfriend at the time who was not the greatest guy my parents blamed him for my slack in school. They even accused me of being anorexic because I could not eat, among other things, and eventually my mom stopped writing me excuses for school, so I started skipping all the time. I was questioned over and over about drug use when I was admitted to the hospital after an SVT episode where my HR topped out at 220- when I had done NOTHING wrong!! I was only 14-15 years old when it all started and the POTS hit me full blown at age 19- and finally my life makes sense- I can look at things that happened when I was younger and just know they were related to dysautonomia. My parents are still coping with their guilt, lol Once I finally had food allergy testing a few years back, my stomach has started to heal and now I'm mainly dealing with typical POTS symptoms- but very happy to have some answers!! Just wanted to share since your high school situation was similar to mine

[beala]

wow you guys I can't imagaine going througth this without any of these websites around or the info. It must have been so hard. Thanks for all your notes~ we have checked out dynakids it's awesome.

Has anyone tried celexa fro brain fog with any results ?

[briarrose]

I tried Celexa for a very short time but it made my already bad headaches much worse. They put me on Zoloft, 25 mg. I experienced the same kinds of headaches. They halfed the dosage to 12.5 mg and I do well with that.

When I took Atenolol for the tachycardia, I started at 12.5 mg and eventually cut that dosage to 6.25. I eventually had to switch to Betatexol.

I recommend finding a doctor that knows about POTS so you can get the best possible care and treatment. I travel over 2,000 miles to see a specialist.

I hope you had time to read the article at Potsweb. Towards the bottom of that article it talks about medications.

There are weblinks too after the article that are very helpful. Please read a mind experiment for doctors!

steph

[UnicornIsis]

Hey try Dr. Abdallah in Manassas. I know others here haven't had a good experience with him lately, but thanks to him I can now walk and am actually going out with my friends this afternoon for a bit. A year ago I couldn't do that. It's all thanks to him.

I agree with Lucky Goat, Hey girl!, DYNA is a great place for us. I'm 21 and got sick at 19 without knowing what was going on. I didn't get my CORRECT diagnosis until the day after I turned 21. I haven't had to go through high school with it, but I did have to leave college because of it.

beta-blockers have never worked for me, even with my migraines. The only thing that worked for those is Morphine to dull the pain enough to fall asleep and phenegran for the neausa.

I'm on several medications now that didn't work for me a year ago. Dr. Abdallah as adjusted them and fit them together to work for me. There are several he wanted to put me on but couldn't because of the way my body reacted and how they would react with the ones I was already on. I am on Paxil. Another dr. put me on it, but Doc A has reduced it and it has helped with the depression too, even though that's not what it was for.

I have never met Dr. Grubb, so I can't offer any advice or opinion on him. I suggest talking to the other DYNA members who have been through high school with this for help. Will you tell us what his DYNA name is? I mean his screenname that way those of us in DYNA will know who he is to be better able to help him.

[migraine]

Sorry, I'm backtracking to Ethansmom's posting. I really do find it so amazing and helpful that more young people are finding a diagnosis to this early on. I have had it my whole life and wasn't diagnosed until I turned 29. Most people don't seem to understand/believe us anyway, but it is harder when you're younger and going through so many other changes.

I remember having a swim coach that made me swim a 1000 while I was having one of my episodes. I almost drowned. My head was killing me and I was sobbing and inhaling water. Or the fact that we tend to be cryers...I seemed to be even more emotionaly than your average teen. And I probably should have been sent home for headaches that no one believed, or been allowed to go to the bathroom or get a drink when needed.

If these teachers had been informed of this disease, I'm sure they would have been more understanding. I hope that your child and others have an easier time in high school with the proper diagnosis and assistance.

[Merrill]

Migraine, I totally agree! I too remember the high school swim teacher making me swim--screaming at me from the side of the pool, while I held onto the edge for dear life. I could barely breathe! I got out of that class and took dance for the rest of my high school life... I didn't have a clue what was going on with my health, of course. I knew I had little stamina for exercise, though (and that dance class meant either sitting on the floor and stretching or doing exercises at the barre and I could hang on!) I also had major GI disfunctions since a kid and took different kinds of meds for what I thought (in my 20s) was simply "nervous stomach aches." A cryer! Yes! Still am! (Thank G-d I have a husband who doesn't seem to mind; he just lets me go on and on sometimes, hangs in there with me, and doesn't judge.) Anxiety attacks, dry mouth, low energy, heat intolerance, sleep problems... the symptoms were all there always--but when you're young, who thinks about your heart? When you're 42 like me, you start to wonder whether the old ticker can withstand this kind of racing, and you finally go after a diagnosis! So that's my story. It IS a blessing that young people not only are getting answers earlier, but that they have a place like dynakids to get support and share ideas and experiences, much as we do here.

Hang in there Beala--Your son WILL get better... once some adjustments are made to his meds and his lifestyle (I'd put that head of the bed down and see how he does) ... It's sooo important (I think) for him to know that he's not alone in this--even if the people who share his experiences live in other states! If he can connect with others through dynakids or some other support network, it would help! (Most of us never had acccess to that kind of thing).

I wonder too how much teenage hormones add to the picture. Time will tell, and time will heal.

(One footnote: I went to a Middle School conference last year and attended a fascinating session on adolescent development. I know your son is out of middle school, but the several-times-daily testosterone rushes that adolescent boys experience lead to what they called "brain freeze." So you know how sometimes you ask your teenager "What were you thinking?" and they answer, "Nothing" -- they're actually telling you the truth! The mind does indeed go blank for a minute there.)

[beala]

Thank everyone, your support is truely appreciated .The only medicine my son is taking now is by having a girlfriend which has really been a lifesaver. He feels so good about himself, hope it lasts. None of his meds ever made him feels better so he went off them a month ago and he only has 8 days of school left, yea !

[ethansmom]

beala-That's really great! Hopefully she will be supportive of him and they can enjoy the summer

Unicorn Isis- I just wanted to comment that I've been seeing Dr. Abdallah for almost 3 years (he made the initial diagnosis). As a physician, I think he's been wonderful with treatment- and very kind and compassionate. He is very experience with treating children that have POTS. The thing that you have to be prepared for is the lack of efficiency in his office (i.e. keeping appointments, getting calls returned, getting test results back, etc...). It can be very trying, but is usually worth the wait.

[beala]

Where is this Dr. Abdallaah ?? What state ??

Laura

[lalalisa]

Beala,

Hello! I wanted to let you know that I'm about to try a supplement that has tremendously helped both of my parents with mental clarity. My mom deals with brain fog after dealing with CFS.

The supplement is called Acetyl-l-carnitine and Alpha-Lipoic Acid - it's a combination of the two. I am going to try it this week.

The have purchased this at http://juvenon.com/ --- They have also tried some brands that don't seem to work as well.

Both of my parents say that they can tell a big difference when they forget to take it.

Also, My father is a family Dr. - he is skeptical of many things out there but claims this really helps!

Hope this helps,

Lisa

[ethansmom]

Laura-

Dr. Abdallah has offices in Manassas, VA- Fredicksburg, VA- Falls Church, VA- Sterling, VA- and Rockville, MD.

I'm not sure where you are located...but here is the physician list from DINET:

http://www.dinet.org/physicians.htm#United%20States

This is the best way to find a good doc closest to you. Good luck!!

[beala]

lalalisa,

Thanks , I wish you the best of Luck with it !

Please let me know how it works for you ~ beala@comcast.net

Are you taking anything else ?

Laura

[lalalisa]

Beala,

I will try and remember to let you know if it helps, feel free to email me though if I forget! =)

lalalisamarie@aol.com

I also take Toprol XL, Paxil CR, Midodrine, and Singulair for allergies. I'm sorry to hear that the midodrine isn't helping - I depend on this daily.

Lisa

[migraine]

Sorry to get off the subject. I was told that I couldn't take any allergy medicine because it would depleat the effect of the toprol which I really need for migraines. I have awful allergies, but I would much rather have a sinus headache than a full out migraine. What are your thoughts?

[Merrill]

Migraine, if it's antihistamines you need for your allergies, take a look at this separate discussion thread:

http://dinet.ipbhost.com/index.php?showtopic=666