Christy_D

I too get migraines that make me vomit. I have to lie down in a dark room with no noise or movement. Ice packs on my head and neck are somewhat helpful.

Christy

Debra,

I can't really help you on this one. There were months here and there that my son basically only left his room to go to the bathroom. I tried to get him out and even to another room of the house, but he was really feeling badly. So I know as much as the doctors want them moving around, sometimes they are just too sick to do it. Once he started to feel a little better he became more social. Have they checked your daughters Vitamin D levels? Last February, my son was in bed almost the entire month and we had to cancel his homebound teachers almost every day. They discovered his vitamin D was like at a 7, way too low. One week after starting vitamin D he felt so much better and his energy increased. If she isn't getting any sunlight, she might have low vitamin D.

Christy

Regarding the migraines, my son experienced horrible migraines that would not go away with normal migraine medications. He was in the 6th and 7th grade at the time. The only thing that would make them go away was a trip to the emergency room and an IV of painkiller-toredol, reglan and benedryl(cocktail). Once he started on Topamax, he has not had a migraine since. He is no longer on the topamax because of the side effects and the migraines did not start back up. (Although they think his nausea might be part of silent migraines).

Christy

My son's POTS specialist is a neurologist. He was the first one to be able to help my son. The doctor who originally diagnosed my son was a cardiologist, but was not helpful at all. All of the autonomic testing was done by this neurologist, so I have found him to be the most helpful.

Can I ask what kind of tests they did on him?

When I went they did the basic tests. But I know he could have done more. He just wasn't interested and passed me on to the cardiologist.

I was later diagnosed by a CFS specialist in my area. the problem is I can't see him now because he doesn't take me insurance. So right now I'm only going to my GP. She's nice, but not much help for POTS.

My son had the Tilt Table Test, MRI(with and without contrast), Thermoregulartory sweat test, gastric emptying test. Because nausea and abdominal pain were part of my son's symtpoms, they also did an endoscopy, colonoscopy, antroduodenal(sp?) tests. The TTT resulted in a diagnosis of POTS, the TST resulted in a diagnosis of small fiber neuropathy and the gastric emptying test resulted in a diagnosis of gastroparesis.

Christy

TLC'S Mom,

That is a very similar story to what we experienced with my son. To get help, we found doctors in Cleveland(9 hour drive for us) to help. If you are able to travel and get the help, I would recommend it. The dysautonomia specialists at Case Western University Hospital have helped my son a lot.

FYI- my son takes Doxepin and it has helped his POTS symptoms a great deal. It took a while to find the right dose to be the most effective, but it has been very helpful.

Christy

My son's POTS specialist is a neurologist. He was the first one to be able to help my son. The doctor who originally diagnosed my son was a cardiologist, but was not helpful at all. All of the autonomic testing was done by this neurologist, so I have found him to be the most helpful.

My son, who is now in the 10th grade, started with the homebound program in the 8th grade. His is still set up as intermittent(sp?). If he could attend, that was what he was going to do and the school encourged that. If he was too sick to attend, say after a couple of days, then homebound would kick in. The homebound teachers taught him what his class was working on. So the homebound teachers reported to his regular teachers and the regular teachers assigned the work. This way he was up with his regular class and could bounce back into school at any time. He was frequently behind, but able to get caught up. Plus with his 504 plan a lot of assignments (busy work) were excused.

He missed half of his 8th grade year and did not attend school a single day of his freshman year. He is currently attending school 4 hours a day and doing 2 classes on line. He missed a lot of the socialization last year and lost a lot of friends. So if she can attend school, even if for an hour or 2 that would be best.

Do you have a 504 plan? and are on line classes available in your area?

Christy

After my son was given a generic diagnosis of 'autonomic dysfunction' I was doing research on the internet. I came across an article about teens with dysautonomia and it matched my son perfectly. The doctor who wrote it was Dr Phillip Fischer at the Mayo Clinic and I emailed him stating the problems I was having with local doctors. To my surprise, he emailed me back within an hour! He gave me great advice, referred me to a doctor in Cleveland(who has been great) and also attached a booklet about 'Teens with Dysautonomia'. He gave invaluable advice, and it was free!

Christy

What exactly does Doxepin do in the body? I am curious that it got rid of his hot spells--that is an AWFUL symptom for me, having to live in a/c continuously for half a year.

How come we don't hear more about Doxepin? Is it something just being offered to younger people?

I've noticed not many people mention being on Doxepin. It is the first medication my son's POTS specialist put him on(he was already on fludrocortisone), and have had success with it. I think the doctor chose it because it has a sedative in it (or effect of a sedative) for my son's sleep issues as well. Plan B, if Doxepin didn't help, was going to be Cymbalta. I'm not well versed as to what's in it that makes it effective, but for us it has been.

Mack's Mom pointed out to me that Doxepin is listed as a drug used for Mast Cell disorders as well. We've had to increase the dose 2 times to get it to be the most effective. He started out on 40 mg and is now taking 150 mg. Since starting the 150 mg, he has returned to school and his insomnia is gone(knock on wood).

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.

When he was first diagnosed, not by a POTS specialist, the doctor gave us fludrocortisone for the dizziness and gave us no other instructions. Well, the dizziness was much better, but he still had a bunch of other symptoms that weren't being addressed. So we saught out a specialist and that's when we were given other instructions, like water, salt, plus other medications like doxepin. Once he started the doxepin, other symptoms started getting less severe(his hot spells went away, his 'licorice' legs went away and heavy head).

They upped his dosage of doxepin and this helped with his insomnia, fatigue, and brain fog. He is now only sick in the a.m. hours. He goes to school at 10 am and the nausea is usually gone by noon. He has made great progress.

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.

Thank you so much for your help! I think the Dynakids website will do the trick. The other articles recommended will be helpful as well. Emphasizing dysautonomia rather than just POTS will make it much easier to explain. Cheryl, do you know how I can get my hands on the overview that Dr. Fisher gives to his patients? I listened to one of his podcasts and thought he was great.

Thanks again-

Lenna

Lenna,

Dr Fischer emailed me a booklet about teens and dysautonomia. I can email it to you if you want. PM me with your email address.

Christy

Lenna,

Dynakids, besides having the pamphlet, also has a booklet you can give to educators. I think it is like 30 pages long or so. This would definitely be a good place to get printed materials for them.

Christy

Lenna,

My son took on line classes and did 2 homebound classes. The school sent 2 teachers, 1 every other day, for Math and English. For math, the teacher taught it to him and he only had to take the tests, not the busy work. Same for English, a lot of assignments were dismissed. For the on line classes, the state paid for them, but it has since been cut out of the state budget. So now the school pays for the on line classes.

My son is back to school for 4 hours a day, after being out for 1.5 years. He is taking the other two classes on line. With his 504 plan, his assignments can be modified or completely excused. Do you have a 504 plan?

Christy

"I have a few thoughts. I re-read your initial post. One thing sticks out that isn't being addressed with his current med regimen: the itchy skin following a shower. That is a classic sign of excessive histamine release which causes autonomic (and a whole host of other) symptoms. Does he have any other skin issues? Weird rashes, hives, flushing, dermatographism (marks left after lightly scratching the skin)? I would encourage you to check out The Mastocytosis Society Website www.tmsforacure.org Click on:" What is Mastocytosis or Mast Cell-Related Disorder" Check out the host of symptoms, etc & see if you think that may help explain some of your son's issues. There is a subset of us (myself included) who experience autonomic dysfunction, a mast cell disorder & a connective tissue disorder.... If you think symptoms fit, adding an H-1 (antihistamine like zyrtec, claratin, allegra) and an H-2 (like zantac or ranitidine) may bring signifiant relief to all symptoms.

Strangely, the doxepin (old-fashioned antidepressant) that Christy describes is another option in folks with suspected mast cell disorders to calm down histamine release. Taken at night, it also helps with sleep and increases the appetite. Atarax is another PM option to consider. Cyproheptadine (an antihistamine) does similar stuff as the other two. This was recommended by my son's ped at Johns Hopkins in a liquid form taken just before bed. It was too sedating for Mack, but so is zyrtec "

Julie,

You are just a wealth of information. My son used to have the itchy skin frequently and the only thing to make it stop was a cool shower. Once he started the doxepin, it was one of the symptoms that went away. I think I will look into the websites you listed to see what else might apply. Everytime I would mention the itchy skin to his doctors, pediatrician, etc. I didn't get much feedback from them. And now that it has stopped, I just figured it went away, but maybe it is the doxepin.

Thanks,

Christy

My son also had a sleep study done when he was 14. While he did not have sleep apnea, he does have restless leg syndrome. His POTS doctors have him on Doxepin, it takes care of a lot of his POTS symptoms, plus it has a sedative it in that helps him sleep. He takes the Doxepin with Melatonin. Since we upped his dose of doxepin last month, he has been sleeping great.

Christy

I see you are on Doxepin. So is my son. He started on 40mg and that helped a little. So they increased him to 100 mg and that seemed to help even more. In August, they upped him again to 150 mg and he has now returned to school. Finding the right dosage of medicine, after spending a lot of time on trial and error with a lot of different medications, seems to be what we were waiting for. If the doxepin has helped some, maybe a higher dose would help more.

Christy

I'm sorry your son is going through this. My son is 15 and also has POTS. His was a gradual increase in symptoms, starting in the 5th grade until it became a daily event also. He, in the last month, has taken a turn for the better. He is finally going to school after missing a lot of 6th and 7th grade, missing .5 of the 8th grade and all of his 9th grade year.

Winters are worse for him, but after starting vitamin D last March, that was a big help. In February, he was in bed 20 hours a day. He was on Homebound, but we frequently had to cancel because he was to sick. He also took on line classes that our school district paid for. Now, he is attending school for 4 classes and taking 2 on line classes.

We had a follow up appt with his POTS specialists in August, they changed the dosages of his medications(upping 2 and decreasingj 1) and added more supplements. This seemed to be what we were waiting for. His medications were somewhat helping before, he was sick everyday until 12 or 2, but the new doses pushed him over the threshhold to being able to get out of bed by 9 and to school by 10am (still a little nauseas but it subsides).

As for exercise, he does water jogging. At first, he would be extra sick the day after exercising. But we kept him at it, and he finally built up his endurance and no longer crashes anymore from exercise. We are keeping our fingers crossed, since it has only been a month of him feeling better. I'm hoping he doesn't revert back in the winter.

My son also had the bad itching and the only thing that made him stop scratching was a cool shower.

I hope you can find that right mix of medications. It took us quite a while to find a medicine that did anything for him, and then it took a 10 months to figure out what dose was the most effective for him. Don't give up hope, I know there were times I thought there was no light at the end of the tunnel, but we just kept looking for answers. I credit his doctors, they are very compassionate and quite knowledgeable.

Christy

My son, too, has tremors in both of his hands. His left is worse than his right. As some symptoms come and go, his tremors are always there.

Christy

Please don't get down or give up(I know easier said then done). My son, after being sick everyday for over 1.5 years, is now doing so much better. He was sick frequently for 2 years before the daily events started. He missed 1/2 of his 8th grade year and his entire freshman year of school. The entire month of February, he was in bed for 20 hours a day. Things were not looking good at all. He just started back to school, only 4 hours a day, but it is great progress. He still wakes up nauseated, but it is not lasting as long into the day as it used to. He is now functional by 10 am, instead of 2 pm or later.

He took a turn for the better after a follow up appointment with his doctors at Case Western University Hospital in Cleveland on August 12th. At this appointment they upped the dosages of 2 of his medications and lowered another. They also added 2 more supplements to the list of meds to take. My son is now sleeping through the night, which the docs believed was part of his problem(not enough sleep = migraines- his were silent) It has only been a couple of weeks, so I'm keeping my fingers crossed that this is what we have been waiting for. We are hoping the new dosages keep working and that they don't stop being effective.

My son does take Thermotabs for his salt supplement. They haven't given him any negative side effects. I think that a combination of the new dosages, the new supplements and the water jogging my son has been doing has brought about this change. I give all of the credit to his two doctors at Case Western, they have been great.

Have you had your Vitamin D checked recently? My son bottomed out last February, and was in bed 20+ hours a day. After finding his vitamin D below 10, he started vitamin D supplement. Within one week of taking the supplement, he was back to his normal POTSY self, out of bed by 12 - 2.

That's the only thing I can think of, I'm sure there are a ton of other possibilites.

Christy

My son was originally diagnosed by a cardiologist, but has always been treated by a neurologist and gastroentrologist. The cardiologist was not very helpful, he gave us fludrocortisone and sent us on our way. While that helped with his dizziness, it didn't help with the multiple other symptoms my son experiences. My son has had a lot of improvement with the medications they have him on, including helping his sleep problems. He just went back to school(only 4 hours), after being out of school for 1.5 years.

My son did a sleep study and saw a sleep psychologist, but like you said, they didn't understand POTS and thought by just adjusting his schedule should help(of course it didn't). So I stopped taking him there as it was a waste of time. He was diagnosed with restless leg syndrome, but they wouldn't prescribe anything since they didn't know how it would affect the POTS.

We are very pleased with the Neurologist and Gastroentrologist team that treats him.

Christy

For my 15 year old son, he has lost:

His childhood.

He has not been to school in 1.5 years.

He can't play soccer anymore

He can't play baseball anymore(his true love).

He lost all of his friends, except 1.

No more girlfriends.

No longer athletically fit.

Everything a kid should be doing, he isn't and can't.

They tried to tell me my son had anxiety, depression or just didn't want to go to school. Even after a psychologist said it wasn't anxiety or depression, a diagnostician told us to find another psychologist. Even after he got his diagnosis of dysautonomia, they still wanted to blame some of it on anxiety. Yet, none of these doctors had spoken to my son for more than 10 minutes. One doctor told me depression was underdiagnosed in this country.

So don't feel alone. We finally found the right doctors, who immediately reassured my son that this was not in his head.

Christy

Garrett,

My son also experiences brain fog. Sometimes it is worse than others. When he is really bad, we don't even attempt to do any studying or homework, since he can't retain or focus on it. His seems to come and go.

Christy