A post for my daughter, who suffers w/ daily headaches & frequent Migraines.

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Traveler
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Date Joined May 2007
Total Posts : 13282
   Posted 1/12/2011 12:17 PM (GMT -6)   
Hi All!
I am usually over at the Lyme Disease forum, but my concerns for my daughter have brought me here to ask a few questions. Thank yo in advance for any ideas, thoughts, tips - or any other type of help- that anyone can offer.

My daughter is just months away from turning 26 years old, but has had serious headaches for almost her entire life. She has been diagnosed with "Chronic Daily Headaches" as well as Migraines.

She has described (to me) her chronic daily headaches as being not at her sinuses, the only constant about them is that there is a knot in the center of her brain. Sometimes the pain will also be behind her ear, or at the very crown of her head, or from the temples up, or she can experience a band of pain form one ear over the top of her head to the other ear in a 1 to 1 1/2 inch wide path.

As for her migraines, she has told me that they go back & forth - with & without aura. Sometimes unilateral, sometimes bilateral. If bilateral she has a lot of nausea, photophobia (light sensitivity - in case I used the wrong term) and she has difficulty with getting 'stuck' focusing on one thing, or one object.

This scares me as I have experienced some small seizures myself & believe that when she has the symptoms of getting her focus 'stuck' like that, she is experiencing a small seizure.

The medications she has been on so far; Imitrex, Relipax, Maxalt (worked but gave her a terrible hangover effect), and one other one that she couldn't remember the name other than it started with a "V" or a "Z".

Right now, from my understanding, she is taking Daypro helps some with the migraines and she just started on Nortriptiline (20 mgs.) at bedtime for her dailies. She is under the care of a Neuro for now at the Veterans Hospital where she works.

She has had these daily headaches since she was very young and her migraines started in during the **** or very early teen years. It's now been about 15 years of this for her - it breaks my heart, but I could only
make her go to a doc when she was living at home still.

As I said - any suggestions, hints or observations are welcome!!
Thank you!! yeah
Co-Moderator, Lyme Disease ;)

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Treating with Acupuncture, Traditional & Modern Chinese Herbs & Western Herbs.

I break my posts up so that I can read them easier. I have neuro LD & the print actually dances around if the paragraphs are very long. Thank you for understanding.

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 9985
   Posted 1/12/2011 10:33 PM (GMT -6)   
That is very frustrating. Her she been checked for allergies? I would think if you were allergic to something very basic, you could get frequent headaches. Could it be something hormonal?

I have awful migraines with my cycle, they seem to come each month and can last a day or two days but on the first and last day of my cycle. It's so painful for me. They aren't like a knot in my head though, they are more like pressure and pain behind my eyes. I have light sensitivity and it hurts when I move or walk, it's even difficult to turn my head. You almost have to lay still in a dark room until it goes away. I am thankful that mine only come twice a month. I recently started taking this medication called Ponstel that is non-narcotic and it seens to really help my migraines. Not sure if it would help for migraines that are not hormonal but it may be worth looking into.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/13/2011 1:21 AM (GMT -6)   
Hi Traveler,

I'm sorry to hear your daughter is having such a difficult time with the headaches and migraines.

The Replax, Imitrex and Maxalt are all abortive drugs (i.e. use them when you already have a migraine). These are certainly helpful and an integral part of her treatment, but she should get on a preventative medication. It sounds like that she has already started this process with the nortryptaline.

Physicians use several classes of medications as preventatives including: Antidepressants (eg nortryptaline a TCA, SNRI's, SSRI's, MAOI's ), Anti-epileptics (topiramate, lyrica, depakote, etc.), heart medications (eg beta blockers, calcium channel blockers, etc.), and many many others. Many people find that some natural supplements help them as well (Magnesium, Feverfew, vitamin B2 and Petadolex being the most common), especially in conjunction with medication. Your daughter may find that the nortryptaline works or she may have to experiment and find the medication that works for her. With migraines, everyone has their own special medication or combination of medications that works best for them. And remember, it can take up to three months for many medications to take full effect. Don't give up on a medication too early!

20 mg is a low dose of nortryptaline (although it is enough for some!), I assume she will be titrating up to 50-75 mgs.

It's always possible that she is having "absence seizures" as there is an obvious familial genetic predisposition (ie you get them). I wouldn't automatically jump to this conclusion though. If you are concerned, she should absolutely mention this to her neurologist (TCA's like nortryptaline can sometimes make seizures worse, so this needs to be ruled out).

Migrainuers are very sensitive in general. We need enough sleep, but not too much or too little. We need to keep regular sleep hours. Sometimes foods can be a big headache trigger (google: migraines AND food triggers). Light is often a trigger (as you and your daughter well know). Certain sounds and smells can also set off migraines.

If I were in your shoes I would get her into a good neurologist who understands migraine. Unfortunately when it comes to neurologist, it is a mixed bag. Some really know how to treat migraines well, and some are absolutely horrible. I would take her to one or two neurologists, and if you can't get the headaches and migraines under control, then take her to a migraine clinic/center.

I hope this helps and best of luck!

Post Edited (EvilFluorescents) : 1/13/2011 12:26:24 AM (GMT-7)


Traveler
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Date Joined May 2007
Total Posts : 13282
   Posted 1/14/2011 1:46 PM (GMT -6)   
So sorry I haven't responded to those wonderful posts yet - Hubby has an emergency trip out of state to make & I have been blessed with my own migraine! UGH! eyes

Thank you so much for such informative posts!

My daughter has been through some allergy testing I know, and she also knows to watch for triggers. They seem to change around sometimes though. Sometimes she can eat, smell, hear or see the triggers without it actually triggering a migraine, but she really just tries to avoid them.

We also know that hormones can play a significant role as well. From the age of 11 or 12 until she was around 20, every time she entered "that time of the month", she could pretty well count on a migraine & sometimes they lasted three days or more. It was during this period that we started using Feverfew, as it was the only thing that would touch her headaches. Now that doesn't work so well any more.

Another oddball thing (at least to the uneducated about migraines, like me) is that just a bit too much stress for her (her tolerance levels are not real high) and she breaks out in full body hives and of course, then a massive migraine.

She has discovered that for her, a very, very hot very looooong shower and then straight to bed after being medicated with a large dose of an OTC anti-histamine, h as been about the only thing to work.

Thank you so very much for the heads up about nortryptaline possibly making seizures worse!!

The info that I have received here already is sooo encouraging - thank you!!! I am used to being my own health advocate (because of my Lyme & other tick-borne infections), so we won't 'settle' for any doc or diagnosis unless we feel it is accurate.

Thank you so much again!!! I'm sure I will be back with more questions as we go through all of the hoops!

Thank you and I do hope you are all having a decent day today!!! smilewinkgrin

Trav.
Co-Moderator, Lyme Disease ;)

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Treating with Acupuncture, Traditional & Modern Chinese Herbs & Western Herbs.

I break my posts up so that I can read them easier. I have neuro LD & the print actually dances around if the paragraphs are very long. Thank you for understanding.

Post Edited (Traveler) : 1/14/2011 11:54:18 AM (GMT-7)


EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/15/2011 2:11 AM (GMT -6)   
Hi again Traveler,

Sorry ahead of time if I have to cut this short, I feel a migraine just starting to come on. I'll write and post as much as I can.

I'm not so familiar with menstral/hormonally related migraines. With that said, I do know that some birth control pills have a tendency to make migraines worse. Likewise, certain types of birth control can be helpful. This is something to talk to her OB and neurologist about. If she can track her periods, she could try taking some OTC pain killers starting a couple of days before they begin and then throughout. This may help to head them off.
Somewhere peaking out of my memory I think I remember black cohosh (an herb) helping some people women with menstral migraine. Best to research this thoroughly yourself (including medication interactions) though.

I'm not familiar with stress causing hives, but everyones physiology is unique. Certainly something to mention to the doctors.

One school of thought, when it comes to migraines, states that migraine is a threshold disorder. So let's say you have five equally bothersome triggers. If you set off three of these triggers you experience a migraine, whereas two would not be enough to do it. This may explain why triggers only sometimes give your daughter a migraine. Good for her for avoiding the triggers when she can. It's best to not lower that threshold if she can help it.

How often does she take OTC painkillers and Daypro (prescription NSAID)? If she takes them more then a couple of times a week, for a long period of time, this can lead to Medication Overuse Headache. Essentially you get migraines and headaches very frequently and the migraines become treatment resistant. She would have to withdrawl from all of these painkillers (under a doctors close supervision) and then only once this is done could they try to treat the original underlying migraines.

Yay, I finished my thoughts and no migraine!

Best of luck!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13282
   Posted 1/15/2011 12:42 PM (GMT -6)   
Hi Evil Fluorescents!
Thank you for responding even though you felt like a migraine could stop you from finishing!! I wish I could give you a gold star for the extra effort!! How about a happy face instead?? turn

So that you know, my daughter is reading these posts, she is just soooo very uncomfortable talking to anyone she doesn't know!! "Talking" on a forum - even this one- where everyone is so anonymous is just an impossible thing for her!! I wasn't even sure she would let me post for her at first!!

As for the hormonal part - I don't think it's as big of a trigger any more. She is on a birth control pill that works well for her - it was a challenge for a while as, like you said, some had a tendency to help her right into a migraine. She did try taking Black Cohosh and it didn't help her at all.

She actually has a pretty good GP, who has gotten her through a lot so far. She only just started seeing a Neuro since dear ole Mum (as she likes to call me!) got on her to get in and be seen because she was having migraines 4 or 5 times a week! smhair That was scaring the daylights out of dear ole Mum!!!

Anyway my daughter and her GP have gotten her through that period (thankfully) without too much of an issue with stuff like Over Medication Headaches somehow. She just found a headache clinic near where she lives and will be finding out if they accept her insurance.

A couple of the complicating issues is that she is a Biologist who works in a lab all day (which is located in the basement of the building) - under fluorescent lighting, looking at little bitty print.

When she was only 4 years old she was diagnosed with severe Amblyopia - or Lazy eye. She was legally blind in one eye & not far from that with her other eye (as it was working too hard to compensate). She has made an amazing comeback - her eyesight is now better than most her age, but I still believe that it's part of the issue. When she is really tired her eye still turn in just a bit.

Giggle!! smilewinkgrin When she reads that she'll say, Aawww, Mom!!! Did you have to say that?? (snicker, snicker!!)

I am waiting for my daughter to send me an email for her response now!! My short-term memory is shot due to tick-borne infections, so her just telling me on the phone wouldn't work out well.


Thank you again, Evil Fluorescents for your thoughts on all of this!!

Trav
Co-Moderator, Lyme Disease ;)

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Treating with Acupuncture, Traditional & Modern Chinese Herbs & Western Herbs.

I break my posts up so that I can read them easier. I have neuro LD & the print actually dances around if the paragraphs are very long. Thank you for understanding.

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/15/2011 3:59 PM (GMT -6)   
Hi Trav,

I was in a position very similar to what your daughter is in. I'm also a little apprehensive about posting specific details, but if you and/or she would like to email me I would be happy to discuss things in greater detail. I have some suggestions that she may find helpful.

I've set up an email account: anonymous2211@ymail.com

Just post whatever email address you (or she) use, below, here in the forum. This way I'll know that I am in fact corresponding with you!

EF

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13282
   Posted 1/16/2011 9:25 AM (GMT -6)   
Thank you EF!!

If you don't mind though, I will just use the email that is listed here on HW ;

artraveler569@gmail.com

I'm a lot more casual than my daughter is, but we are both very interested in listening to others experiences & suggestions at this point!

Thank you again!!
Co-Moderator, Lyme Disease ;)

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Treating with Acupuncture, Traditional & Modern Chinese Herbs & Western Herbs.

I break my posts up so that I can read them easier. I have neuro LD & the print actually dances around if the paragraphs are very long. Thank you for understanding.

CZC
New Member


Date Joined Sep 2011
Total Posts : 1
   Posted 9/14/2011 1:21 PM (GMT -6)   
Hello,
When I read your post I felt you were describing me! I too have suffered from daily headaches for a long time. My headaches seem very similar to your daughters. I started taking Nortriptyline about a year ago now and it is a life saver for me. I was greatly debilitated by my headaches and now with a very healthy diet (foods can be a great trigger for migraines), and slowly increasing my dose of nortriptyline, I only have headaches maybe once a month. I take 100 mlg of it a day. I didn't notice a change until I reached 75 mlg. daily for a about a month and was still getting headaches, just less frequently. 100mlg seems to be the right dosage for me. Hopefully, this helps! I know how extremely painful, and frustrating a daily migraine can be! I wish your daughter well.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13282
   Posted 9/14/2011 3:24 PM (GMT -6)   
Hi Czc,
Thank you so much for your concerns! I guess that I should have posted a last time explaining what we ended up doing, sorry!

Nortriptyline didn't work for my daughter, the only thing it did for her was give her intense cravings for sweets - not good! LOL!

She actually ended up turning to Acupuncture and Chinese Medicine. They have worked wonders for her! The acupuncture helped to stop the daily pain and then the Chinese Medicine has brought her migraines down to the point where she is only having one every 6 weeks or so!!! Just this side of a miracle for us!

We are soooo grateful for all of the help and concern this forum has brought to us! Thank you all!!! :)
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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