Hi. My 14 year old son has not yet been diagnosed. He has seen a doctor familiar with dysautonomia and is scheduled for tests. The doctor is thinking POTS. I am not sure if I am more frightened about him having POTS or starting over from scratch having various medical professionals tell me there is nothing wrong with my son and he needs therapy.

It started in late Feb. with the flu virus which turned into pneumonia. As he was recovering from the pneumonia he passed out. The first few times it was in the shower. The ER docs said vasovagal reaction, increase salts and fluids and it would go away in a week or two when he was fully recovered from the virus.

Unfortunately, that did not come to pass. He started being dizzy more and passing out when he wasn't in the shower....he could be getting up, walking across the room or sitting in bed playing video games. Upon regaining consciousness he always has a severe headache.

He has headaches that have been diagnosed as atypical migraines that started the same time as the fainting. He may or may not have a headache daily but he always has one after fainting.

His PCP told me to start taking his BP and Pulse when he was dizzy. His blood pressure would usually be 80/50 to 44/38 with a pulse that varied from 40-106 depending upon his position. She suggested a cardiologist. The cardiologist said it was normal after a virus and to increase salt and fluids and it would get better. Both my sons PCP and I were not satisfied with this answer.

We decided to get a second opinion. This time my husband went with. This cardiologist said there was nothing heart related wrong with him and after a heated discussion with my husband (who knows as well as I do something is not right) she put our son on florinef and 1000mg of sodium. She gave him an event monitor and a 24 holter.

We were a couple weeks into the event monitor and meds when I found this site. I found the nearest doc and got him an appt. as soon as I could. When I picked up records from his event monitor the doctor had written that though he had arrhythmias, tachycardia and bradycardia during his episodes they were IN NO WAY related to his symptoms.

When we had our appointment with the doctor I found on dinet.org he noticed the blood pooling in my sons legs. He told me suspected POTS based on what I had told him, the records and the venous pooling. Since my son was already on Florinef and sodium he said we had two option. A) Administer Florinef appropriately (it was prescribed wrong) and increase salt to therapeutic level and see if he got better or B) Take him off the meds for 3 weeks (so meds would clear his system so testing would be accurate) and do testing to confirm diagnosis and start a new treatment plan which could be Florinef and sodium or something else entirely.

We chose option B. We desperately want a diagnosis and effective treatment plan. His fainting and dizziness have not been worse since going off the meds but his headaches have been.

This week his head hurt so bad functioning was impossible. The neurologist sent him for an infusion of DHE, Zofran and Toradol. It did not help. Thursday the neuro admitted him to the hospital for infusions every 6 hours and changed the Torodol to Nubain. He has had 7 or 8 treatments now and his headache once got down to a 5 but has mostly stayed at a 7-8.

The doctor had me come into the hall for a talk. He told me the meds should be working by now and that maybe my sons headache is stress related or has an emotional factor to it and he is referring him to a counselor.

I am at my wits end. My son is a very active athletic young man with incredible pain tolerance.

After this long winded first post....my question is....Is it normal for a migraine to be so hard to treat if a person has a dysautonomia?

Does anyone have any ideas of how to ease my sons headache?

My son's Symptoms:
Fatigue, Headaches, Dizziness, Venous pooling, Cold extremities, Brain Fog, Inability to regulate body temperature, Fainting, Low Blood Pressure

Tests he's had:
CT, MRI, TCD, Carotid Doppler, Echo, EKG

Tests he's scheduled for this week:
Blood Volume Test
Tilt Table
Ansar
QSweat

Thanks you for reading this post. I would appreciate any ideas. My heart is breaking and I am frustrated beyond belief.

~Tonya

Tonya I am so sorry. I have so often thought of how terribly hard this is on the people who love the people who are sick! It has to be just brutal.

I wish I had something more helpful to offer. Many of our the people we knew in Mexico had migraines and couldn't afford prescription meds. We gave them regular dose calcium and vitamin b and that worked as a preventative -- they got fewer headaches. (My grandma's dr. told her to take I think it was B-6 ? and she never got a migraine again though she had suffered with them all her life). My husband will get headaches where he vomits: I rub his back every evening and give him a daily steam treatment and he's been to see a chiropractor to get his spine issues straightened out, and his headaches are now much less frequent: if it's stress related something like a massage that relieves the stress in your muscles etc. might help. I found this article which you could share with your doctor if you think it might help at all. I hope something works soon; I'm so very sorry.

http://www.mgwater.com/prev1801.shtml

quote:

Does anyone have any ideas of how to ease my sons headache?

I would schedule a Sleep Study ASAP. If the headaches are related to Apnea, he could find almost immediate relief. Some people do. Here is a bit about the connection between Migraines and Apnea:

Patients in this study were evaluated at St. Christopher Hospital for Children, Drexel University, in Philadelphia, Pennsylvania. Ninety patients with headache and sleep problems aged 5 to 19 years underwent polysomnography, an electroencephalography-based sleep test. Migraine was the most common type of headache, occurring in 60 of the 90 patients. Another 11 patients had chronic daily headache, 6 had tension headache, and 13 had nonspecific headache, such as morning headache. Sleep-disordered breathing, including obstructive sleep apnea, was about twice as common in the migraineurs as in patients with other types of headache (56% vs 30%, respectively), the authors found.

http://tinyurl.com/3j9lry

You might also want to check out the possibility of supplementing B vitamins and Magnesium as these can sometimes make a difference.

Good luck. Let us know how it goes. It is hard enough dealing with problems when they are our own. Much harder when it is our child.

I can't add anything about the headaches except for maybe supplementing with magnesium but I am not saying that will solve anything - maybe just something to try.

But, it sounds like you are getting the right tests done and I hope that you receive a good plan of action once the results are in.

Good luck, we're all thinking of you.

I want to '3rd' the magnesium suggestion. My son participated in a study of magnesium impact on migraines and it was helpful for him (he did not have any other illness though).

But as with all things, be cautious not to overdo it and check in with his dr.

My opinion, it is better to have a diagnosis of POTS than dr's scratching their heads and throwing out mental health issues as a cause of his physical ailments.

Good luck with the tests this week. Let us know how it turns out.

Thank you all for your replies.

Late yesterday afternoon the psych consult happened. The psychiatrist spoke with both my son and I separately. His conclusion is that there is no psychological problem going on with Gage. Our family already knew that but it was a relief to hear a professional agree.

The psychiatrist called the neurologist and late yesterday evening he made a surprise visit. His 3rd of the day. He said he trusted the opinion of the consultant and wondered aloud what other treatments we could consider. I asked him about B6 and Magnesium. He said the magnesium was worth a shot...after the DHE last night they infused Gage with a magnesium for an hour.

His headache is currently down to a 5. The neurologist is also having a different doctor in his practice consult on Gage's case as he is a headache specialist.

I am hopeful that now with the psych component out of the picture we can continue on with this doctor and get results.

He loved the idea of a massage and it helped relax him.

Last week I emailed his PCP about a sleep study but he has yet to respond. I will also ask the doctor when does rounds today.

~Tonya

Hi...nice to hear that his headache has eased up a bit, and that you are finished with the psych eval.

Since he is still in the hospital, I can think of a couple of other things that might be tried.

Oxygen;

Some investigators have found it useful, however, to use oxygen therapy in patients with migraine headaches. I have found approximately 50 percent of my patients with migraine headaches will be able to achieve some relief with oxygen therapy. They use 100 percent oxygen for eight to nine liters a minute for up to 30 minutes. If no effect has been achieved by that time, it is unlikely that one will occur.

http://tinyurl.com/64ast3

And anticonvulsants:

Antiepileptic drugs have been found useful for the treatment of a variety of disorders besides seizures and neuropathic pain. At the recent Headache Update 2000 symposium, cosponsored by the Headache Cooperative of New England and the University of Massachusetts Medical School, researchers discussed the role of anticonvulsants—including divalproex sodium, gabapentin, lamotrigine, tiagabine, and topiramate—in migraine prevention.

http://tinyurl.com/5wjyda

I had headaches myself and can empathize. It just may take some experimenting before finding what works.

Take care. Keep us updated.