Help, I Don't Know What To Do?

[wilsonh5]

My daughter is 14 and has just recently diagnosed with POTS. She is on Midodrine 10mg 3 times a day, Florinef 0.1mg 2 times a day, Thermotabs 2 tablets 3 times a day, Trazadone 50mg at bedtime and just recently put on Periactin 4mg at bedtime. Her major problem is headaches, she has had a chronic headache for 1 1/2 years now, not a day goes by without a severe headache. I was just wondering what anyone else has tried for this and if anything had helped?

Thank you for any input you have.

[writerlymom]

A friend of mine had trouble with Trazadone due to headaches. Wish I could be of more help. Hang in there!

[wilsonh5]

The headaches came before any of the medication she is currently on.

[jadecat]

Both the Midodrine and fludro increased my 3 children's head pain. Lots of talk about Gabapentin as a migraine praventative:

http://www.ncbi.nlm.nih.gov/pubmed/11251695

But you would have to check with your daughters POTS Dr. to see if it might cause more ANS issues.

[srb]

That is interesting. I was not able to tolerate Trazodone, though I liked how it was helping me get real, restful sleep. It exacerbated a lot of my autonomic difficulties.

I'm sorry I don't have any solutions for the headache issue. I do have a headache on most days, but I'm sure if it would qualify as severe. It sure does make it hard to concentrate.

[Katybug]

Has she been evaluated for chiari malformation? Daily headache is a symptom. Obviously there are many other symptoms of chiari as well.

[wilsonh5]

Katie,

She has had an MRI, MRA, and CT of head and 2 different Pediatric Neurologists has looked at them and they seem to be normal.

[xRobin]

I had new onset daily migraine headaches and migraine induced neurological symptoms, they were called 'complex' migraines, a few months prior to onset of POTS. I had full on melon-crusher headaches 2-3 times a day. I sympathize with your daughter!

I saw a neurologist who recommended a migraine preventative. We chose gabapentin because of its low side effect profile, but there are many other options in several drug classes. It worked really well for me at a moderate dose but it took several weeks to see results. After POTS I went on a beta blocker which has also helped a great deal, between the two of them I would say I am 90%-95% better as far as the migraines go.

Have her neuros tried to treat the headaches at all? It might be helpful to seek a headache specialist.

There are many non-pharmacological treatments for headache as well such as elimination diets, acupuncture, and some people find message in the upper back and neck muscles very helpful. Because of her age it's also possible that hormones are a factor and some people find relief with hormonal contraceptives.

With headaches there are a lot of things that can be done!

[wilsonh5]

The first neurologist we saw was supposed to be a "headache specialist" and she just told her it was "in her head".

Then I made an appointment out of our state with another neurologist and he was the one that diagnosed her with POTS. She has been on several things for her headaches. We have tried several chiropractors, massages, acupuncture, herbs, supplements, she has seen approximately a dozen doctors and has been on approximately 20 different medications.

I have asked her GP about hormones and all he told me was it was a possibility. I am just so frustrated! I feel so sorry for her and I can't do anything to help her.

[arizona girl]

I'm sorry your daughter seems to be really suffering. Must be hard to watch as her parent. Sadly so many doctors do not understand the dysautonomias very well, and even if they do, don't necessarily know the best way to treat it. Since the headaches preceded the treatments, would she say they are the same kind off headaches as before she started the treatments or different? Some of the medications that treat dysautonomias can also cause or make headaches worse, depending on the patient. Headaches also don't alway happen with every patient with dysautonomia. It sounds like she had a lot of scans, but have they tested her for other potential causes of her symptoms?

What exactly are her symptoms? Are they only orthostatic or do they also occur when she is supine. Specifically what happens to her blood pressure and heart rate when she goes from standing to supine and back? Does she have symptoms with other parts of her autonomic nervous system like digestion, sweating, body temperature, bp/hr? When you know she sick with a virus or bacterial infection does she run a fever? Does she get frequent infections? Is hypermobile? These are just a few of the common subsets of signs and symptoms that patients with dysautonomia can have, depending on how she presents will help point you towards a more appropriate specialist.

Were you able to look a dinets' physician list to see if there was a doctor near you, that may be more helpful? If you mention the part of the country you are in, someone on the forum may know a better doctor to refer her to.

As many on the forum will share less is more when it comes to medications, many of us need to take baby doses and can not tolerate larger doses of medications.

[looneymom]

Hi and welcome to the forum. My son is 14 and also suffers with a daily headache. He has been tried on many different medications and nothing helps. Some medications have made it worse. He was diagnosied with POTS in 2011 but his headache started after walking pneuomina in December 2010.

About 9 months ago my son had the Cunningham Panel ran when he was very ill (double ear infection) and his other POTS symptoms were flaring. This test was positive for these PANDAS antibodies. My son has not been diagnoised with PANDAS however these anti-neuroantibodies are found in other illnesses and can cause neurological problems.

These anti-neuroantibodies are caused by strep, viruses, mycoplasma bacteria, and other infections that did not clear up with antibiotics when the child is sick. Eventually the body begins to accept the antibodies and more damage is done to the body. However, there are other antibodies that have been discovered besides these and can also cause neurological problems. My son kept getting worse after infections and his POTS medications would not keep his blood pressures up.

Headaches can be a symptom of POTS but can also be a symptom of another underlying illness. I feel your pain of trying to find a doctor to deal with the headace problem. A Peds. neurologist would probably be the most helpful if they understand what POTS is. An immunologist can help if infections seem to be a problem. My son has tried some narcotics but these medications make other symptoms worse. An ice pack does seem to help him at night but I have not found a medication to help during the day time. Here is an article that explains these antibodies in more detail.

http://www.wieslab.se/index.php?headId=73&pageId=73&langId=1&diseaseId=94

[CherylR]

My daughter takes Topamax as a migraine preventive. She takes it twice daily - morning and night. For breakthrough migraines, she takes Imitrex and Phenergan for the nausea, if needed. She has also used an over the counter herbal patch, BeKool for Migraines, which she found very helpful. I hope you find something to help with the migraines. As a parent, it is very difficult to watch your child suffer. Wishing you and your daughter well.

[blueskies]

Hi,

I have chronic daily migraine. At age of around 50 I was put on periactin. It worked beautifully for quite a while. Then it stopped working. I took a 'holiday' from it on the neurologist's advice and then tried it again and it worked. This working/not working pattern repeated itself for some years then the periactin didn't seem to help enough at all with migraine.

I was always bemused that a medication meant for teens with migraines helped me. But I also have a lot of allergy issues and periactin is an old generation anti-histamine so it sort of made sense. I would still use it as an adjunct but it really does a number on my constipation problems. It blocks me up completely. Like a lotof other meds.

It may take a while to start. As I said, I was 50 not a young teen. I needed 12mgs a day to keep the migraines away. It worked within days for me when I first tried it.

Oh, it helps with appetite. I was always very hungry when on it and ate far too much. It is also used for anorexia, i have read.

It also caused me to be extremely tired. But that side effect did lessen over time.

blue

[wilsonh5]

Thank you for all your input!