hello I am new here, daughter has daily headaches

[Julia Panther]

Hi, I am new here.  My 12 year old daughter was diagnosed only last week, though I'd had suspicions for some time as she has Ehlers Danlos and daily headaches with it...  We are trying to find out if her headaches are 'just' due to POTS (and if so how to stop or decrease them!) or if they are more to do with muscle tension in her neck, or even Chiari etc.  She doesn't usually have a headache first thing in the morning, but she does have one every single day by the afternoon, and it's worse if she looks down, and it's worse if she's spent the day at school (presumably because she looks down a lot there!)  She also gets some blurred vision, and occasional frequent urination bouts.  Doesn't seem as severe as when I get migraine and have to lie in bed in the dark, but the fact it is every single day (and has been for more than 6 months) is pretty upsetting to her.  The headache doesn't seem to go away until she goes to bed for the night again, though there have been the odd occasion when some combination of Paracetamol, Tiger Balm on neck and Nuun electrolyte drink seem to make it get a little better.  The doctor said if it was a Chiari problem she'd expect vomiting and waking in the night with a headache, but what I've read online suggested this wasn't necessarily the case...  Also, the doctor is keen to try standard headache remedies before suspecting anything sinister, but are there standard remedies for e.g. migraine that someone with POTS really shouldn't try?  This doctor doesn't know anything about POTS and I'm a bit worried that she suggests something like beta blockers, which I've heard are good for certain types of POTS but not others...  There isn't a POTS specialist up here in the North of England (we live in Durham) who will see kids.... unless anyone knows differently?

 

[dancer65]

I believe Julia Newton has a clinic in Newcastle. I am in U.K. Have you looked at The Stars website (search stars syncope) they have a list of Doctors dealing with POTS. They have a helpline too which I have used when I was trying to get a diagnoisis and they were really supportive and constructive 

I am sorry your daughter has bad headaches, I suffer with them a lot , over the counter painkillers sometimes works but I often have to take a prescription migraine tablet and lie down to get rid of it, I think mine are related to how fatigued I am along with low BP. I really hope you can figure the cause out for her.

I hope this was a bit helpful !

 

[vepa]

Does she say what type of headache it is? Where the pain is located? I used to get frequent headaches that felt like a pulling sensation, like the front of my brain was being pulled away from my skull. Looking down and then up would make it worse. My doctor said it was caused by low bp, and once we got my BP up the headaches went away.

[DizzyGirls]

It sounds like it could possibly be a case of craniocervical instability.  My daughters have EDS also and my oldest just had a multiple spinal fusion from C3-T4.  Even though hers wasn't craniocervical instability (she had cervicothoracic issues), the fact that there was pulling on her spinal cord gave her the same symptoms as one who has CCI.  I would encourage you to read any information you can find on Dr. Fraser Henderson.  He's the top US neurosurgeon for CCI.  He's EDS and POTS savvy, too.  You don't necessarily have to go to him, just read his articles, they are very enlightening.  Also, the vomiting part and the other things the doctor told you about Chiari are not correct.  Most people don't have those symptoms.  They most likely COULD, but as you have found already, there is a whole lot more to it.  I hope you can get to the bottom of this soon.  It's hard to watch our kids suffer!

[bkweavers]

My daughter also had daily headaches for the first 9 months after being diagnosed with POTS. They didn't present exactly like your daughter's but what finally helped for her was extended release alprazolam or Xanax.  

I think my biggest piece of advice is to find a dysautonomia specialist for your daughter. I understand if money is a reason for not being able to pursue a specialist but if you're able to , it is well worth it to have a knowledgeable doctor who can help her, even if it's a doctor who doesn't normally see adolescents. We drove from Wisconsin to Ohio for a few years until we found someone closer to us but it was worth it. If you do keep the doctor you have, give him or her as much information as you can on POTS and her other conditions and hopefully, the doctor is willing to learn and listen.

I know it's awful to watch your child suffer. I can tell you that it took time, but we did find medications that worked and in the end, my daughter did get better.

My prayers are with you and your daughter.

Brenda

 

 

 

[bombsh3ll]

I have daily headaches too which I believe are due to the poor cerebral blood flow caused by POTS. Although I have some features of EDS and am waiting to see a geneticist, I have had both lying and sitting MRIs of my brain and neck, in flexion, extension and neutral positions which have ruled out a Chiari or craniocervical instability. 

I am in the UK too and unfortunately had to pay privately for the upright brain and neck ones. It was worth it to exclude these conditions. Has your daughter had an MRI at all.?

I saw Professor Newton who said headaches are common in POTS due to low blood flow and should improve if the POTS is optimally treated. Unfortunately mine isn't as yet, but it does seem that POTS alone can cause this without necessarily another underlying problem although it is still good to rule things out if you can. 

My headaches come on when I am sitting upright, worse when standing although I cannot stand for very long, and go away when I lie down or recline. This is generally the opposite of what you would get with raised intracranial pressure. 

[electricpower177]

I have had headaches after diagnosis of my pots too especially if im at school and specifically at afteroon(the burning sun),it feels like u wrote my story!

Sure these headaches are caused by pots becoz pots leads to poor cerebral blood flow and heart palpiations which causes cramping in carotid arteries(these arteries passes through two sides of your neck to supply blood to brain) and in ur head too.I get headaches too everyday...they are very irritating

[AnnHasPots]

A lot of you are describing getting headaches when you are upright or with head movement. 

I have a POTS diagnosis (heart rate increase on TTT), but the headaches and POTS are symptoms of not getting enough blood flow to the brain due to artery spasms. This is something to rule out with a transcranial doppler because it can lead to strokes. My headaches responded well to Asprin and not other pain medicines (and now, I know why).
 

[Julia Panther]

Thanks to all of you for replying... My daughter is now on low dose Propranolol betablocker.  Really helps with headaches though she has to take them several times a day as they wear off.  But still has severe coat hanger pain when she raises her arms and we are thinking she may need to give up the violin, which would be really sad as she plays beautifully.  Any solutions for that one?  Sadly she can't see Prof Newton in Newcastle (though we live near by) as she only sees adults (well, 16 and up, my daughter is only 12..)  Interesting re the aspirin and the risk of strokes... hopefully the beta blocker is making that less of a risk?  Kids not meant to take aspirin... risk of Reyes.  Have read about Henderson's work, but think it needs to be a vertical MRI to spot Chiari... can't get one here...

[yogini]

It can be a lot of trial an error before finding the right treatment.  Your daughter is just getting started.  She is likely to feel better one she gets the right treatment.  If something like playing the violin is making her worse, she could try to do it sitting down - that is less stressful than standing up.  Also if she does it less - like for fewer minutes a day or fewer days a week maybe that would help.  Are you measuring her heart rate and blood pressure throughout the day?  I am wondering if they correlate with her headaches.

Edited January 25, 2018 by yogini

[MomtoGiuliana]

I play the violin too (and teach it).  I hate the thought she might give it up!

Just a thought that perhaps seeing a physical therapist or an expert in the Alexander technique may help?  Many people who play the violin seriously can develop pain with playing, and I suspect someone with EDS could be more at risk for problems.  I've heard of kids without an EDS diagnosis dislocating shoulders due to less than ideal set up.   This seems to be a big topic these days in the violin teaching world. There is a new book Teaching Body Mapping to Children that addresses all the ways that faulty mapping of one's body can lead to injury and provides helpful ideas for music teachers to work with their students (and themselves perhaps!) on to re-map their body.  I've attended workshop classes on the Alexander Technique and would love to learn more--a good therapist in this area could perhaps be helpful.

[Debbie Rose]

Maybe not totally related, or not at all but I had severe headaches daily that would come on as the day wore on. I do also have migraines-have had since puberty. Sometimes Maxalt helps some of the time if I have caught it early enough. Other days I hide under the covers with a heating pad and just whimper-sometimes it can go on for days.

However I also discovered something that has taken yers for me to learn. I have always been slightly anemic-not bad-just one or 2 points below normal. Each year the recommend iron after my GI studies find nothing. However my stomache does not appreciate the pills and the liquid is "ugly" and so I was never good as consistency. But a few months ago-before the holidays I spent 2 weeks diligently taking my iron and BAMMM!!! my daily headache went away. So since then I have been religious about taking my iron pills and my blood work shows I have a healthy HGB and HCT.  My other issues of "ferritin stores" was too expensive to do, but I know I feel better and thats what's great

Also lack of enough fluids and dehydration can also cause a headache for some.

Just some info

Debbie