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Post  Sara79 on Thu 04 Jul 2013, 1:44 am

ETA- I wanted to keep my progression in one thread, so I pulled this one up and added this line and changed the title

OK, so things spiked badly enough in May that I requested a referral to the Neuro group at my work...First available apt, October.  Evil or Very Mad   Ended up back at the primary's office, and said that I'm at the point that I'll pay the higher specialist co-pay to go to the 'family of doctor's' neuro, so long as any major testing could be done at work (no out of pocket costs for tests done at the hospital).  


My primary and I have put me back on the preventatives I'd been on before (Verapamil, scheduled Neurotin, and amitriptaline), which I knew was where any neuro was going to go first, so we did it before, just to try to keep me from needing the neuro.


They got me in extremely quick.  I was referred on Thursday and got in the next Tuesday!  Started out as the standard neuro office tests, reflexes, walk, walk on toes, walk heel to toe, squeeze hands, push/pull....  Then we started picking apart the migraines.




Their first line of attack, diet:

I mentioned that I'd quit going there the last time, because the PA I'd been seeing was adamant that I needed to be on a raw vegan diet.  Sorry, but I'm omnivorous, and I'm not giving up hot food, especially during winter.  She startled a bit, and asked if I was willing to do any diet modifications.  I'm dairy free (mostly) and I live with a celiac who's 95% dairy free, so yes I'm willing to modify up to a point.

They want me off caffeine, completely, which is going to be nearly impossible.  Part of my med routine includes a room temp Coke, both to settle my stomach and to help the meds kick in quicker.  

Also off artificial sweeteners, no problem, I only used stevia and it's OK, they want me off the pink and blue packet junk.

Off all MSG...I know it can help, but getting all of it out of an already difficult diet is very tricky.  I know many of you know how many ways they hide it, specifically because people avoid it.



Second line, meds:

I've got a migraine cocktail that's working for me, I'm just using it a lot.  She's not changing any of it. Very Happy  The primary and I had just added back the amitriptaline, so she didn't want to change anything preventative until they had some data on if it was helping.  So in the end, no med changes at all.



Third line, physical therapy:

Since I mentioned that I've got a lot of tension in my neck and the migraines make the tension worse, which makes the migraines worse, she determined that I'd benefit from PT.  Have any of the rest of you gone this direction, and did it help at all?



Future thoughts:

Possibly Botox, especially if PT doesn't help.  Possibly another sleep study, to see if my CPAP is still helping, but when I'd told her that I've raised the pressure myself, since I was waking up feeling suffocated, she backed off on that a bit.  This was the point when she remembered that I am trained in the treatment of sleep apnea, and was doing this with the blessing of the primary.  

She didn't verbalize any other options, but I know there are others out there.


______________________________________________________________________________________________________



Sorry for the novel, I've been feeling the need to organize my mind after the visit, and I wanted to ask ya'all about PT.  If any of you have any thoughts or ideas that the doc/the neuro/or myself have missed, please toss it out there.  I go back in 4-6 weeks, and I know that many of you know as much if not more than some neuros, even if this is the locally well thought of neuro for migraine.


Last edited by Sara79 on Mon 09 Dec 2013, 4:17 am; edited 1 time in total (Reason for editing : updates)

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Post  30yrsofheadache on Thu 04 Jul 2013, 4:54 am

PT for my neck is one of the few things that helps my migraines I have only been to 2 PT's that were really helpful. I have probably been to at least 10! They were trained in cranial manipulation (I think thats what its called). That is all I would let them do. The rest is useless for me.

I have tried ultrasound, electric stim., etc. They like to do these because they can charge more and an assistant can do it. Also, many forms of exercise make me worse, and I let them know I wont do them (like arm bike). You may have to work with several PT's to find one that is right for you. I hope you do!
Hugs,
Cindy

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Post  Sara79 on Thu 04 Jul 2013, 5:35 am

Thanks Cindy!

The referral is for "Eval and treat for migraine neck pain with myofascial release and U/S". I figured the U/S (ultrasound) wasn't going to do anything, but I wasn't sure about the myofascial release. I'll ask about cranial manipulation.

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Post  milo on Thu 04 Jul 2013, 8:12 am

I think physio is a great idea.  In planning on doing it myself for my neck.  I also need to say that my dietary changes are helping so much.

I do no fake sugars including xylitol, stevia.  I eat as little processed foods as possible and avoid any ingredient that may be hiding MSG. Also cut out all the ates: nitrates, sulfates, phosphates etc.  I eat no wheat and almost no grains.  The home is glutenfree and dairy is my next hurtle.

I hope you find some relief soon!
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Post  Platypus on Fri 05 Jul 2013, 12:25 am

All opinions are my own, etc. etc.

PT helps my back a ton but does nothing for my migraines, and I've never heard of PT as a migraine treatment. I think PT is great if you have muscle pain or tension. I don't think PT will touch migraine.

MSG is absolutely the number one dietary cause of headache. MSG causes headaches in many non-migraineurs. Yes they hide it a lot in foods. So how do you avoid it? First of all, stay away from prepared meals sold at supermarkets, they use various forms of MSG as a flavor enhancer in those products. If you buy packaged foods, don't buy it if it includes "natural flavoring". That is very likely MSG.

Caffeine -- it is very widely agreed that regular use of caffeine is a common source of rebound headache. If you're using Coke to settle your stomach there's dozens of alternatives you could explore, from Chamomile and other teas to Omeprazole. There is nothing in Coke that makes medicines work faster.

No one who knows anything about migraine would suggest a vegan diet. The migraine elimination diet is pretty much a matter of consensus, with a few variants. It looks nothing like a vegan diet. I'm not aware of anyone anywhere suggesting meat is a problem -- only additives/treatments/preparations: sulphates, nitrates, aging, smoking.

-Platy
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Post  Sara79 on Fri 05 Jul 2013, 7:54 am

Platy-

There's nothing per se in Coke that makes the meds act quicker, but since it's one of the few times I use caffeine, it 'revs' up my metabolism. Plus, room temp or warm liquids allow pills to dissolve faster, as does the acidity in the cola. I can substitute it with herbal tea, but I've gone caffeine free before and it made no difference in my migraines. Which is the other reason I'm whiney about giving up something that helps me, and has made no difference to me.

I'm not wanting to argue the point, but I did want to point out my logic, and to share that I have previously tried what she's asking, and saw no relief, which is why I hate to give it up again, after I've proved that it changed nothing for me.



I realize many of you here are off all forms of MSG you can find, and some I don't think my doctors know about. This is my last week on 40 hour weeks, next week I start working 3-12 hour nights, which will give me more time at home to investigate and change our diet (four fewer hours isn't much, but 25% fewer commutes is huge!).


I did use my crock pot to get a large batch of kidney beans cooked, which I will freeze in portions sized for DH and I. I've done this in the past, both for the budget and to avoid hidden gluten triggers, but I know this also eliminates canned beans as a MSG source. I just may have to approach this as a 'find a source this week, two the next' and so on until I've gotten it out of my diet.


On the PT, she viewed it as stronger back and neck muscles lead to less muscle tension, which may help trigger fewer migraines. I'm willing to try, but I'm not sure how much this will help my head. Now my lower back pain I still have 10+ years after lumbar surgery, I think it could help a great deal!

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Post  Platypus on Fri 05 Jul 2013, 12:20 pm

It may be that your caffeine intake is too low to cause any or only trivial vasoconstriction in the head.
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Post  Sara79 on Sat 06 Jul 2013, 4:51 am

Very possible. I'm not a quadruple shot latte kind of person, but when I'm at work, and my head starts thumping and my stomach churning, that can of Coke tastes better than anything else, and it gets me through the rest of the night. I'll freely admit I'm being whiney, so your viewpoint wasn't going to upset me, I just wanted to explain myself a bit more in depth, since I had plenty of space here to do it.

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Post  Migrainegirl on Sat 06 Jul 2013, 3:36 pm

Sara, be careful with the PT. mine made it much worse. I got a migraine after every visit and had to quit. That is because they do neck manipulation and a bulging disk/nerve compression is what started my migraines in the first place.

I do have very good luck with deep therapeutic neck massage however. It relieves a lot of the neck strain (tight muscles in the traps and occipitals) that either contribute to them headaches or area result if them (hard to tell which). If you can find a good massage therapist, this is most worthwhile.
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Post  Sara79 on Sat 06 Jul 2013, 9:31 pm

Thank you for your knowledge Migrainegirl.


I did have bulging discs, but they were lumbar (very low back/buttocks) not cervical. Have you tried anything to help treat them, or are you exploring surgical options? I was unable to lift my toes correctly, and had some sciatica, so the neurosurgeon told me my best option was surgical removal of the bulging discs, so now I only have 60% of the disc on my L4/L5 and my L5/S1 discs.

I've got full range of motion, and no longer have the toe dragging. I've learned that I have some arthritis there, but it's minor and only acts up if I've been stupid.

Anyways, I've got a doozy, and I can take more meds now, so I'm off to the Kitchen.


Take care ya'all!

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Post  Cluelesskitty on Thu 18 Jul 2013, 4:37 am

I don't remember if i told you guys this or not, but around Easter  I threw the stick to my dog forgetting to release the leash prior affraid 

The dog pulled me forward so fast and so hard I ended up with moderate whiplash, moderate facial burns and mossy, grassy dirt all over me  What a Face  pig 
anyhoo.

My dr reffered me to a RMT (registered massage therapist?/technician?) and I was surprised how much it helped with tension and pain.
It also helped a bit ease the migraine pain, too.

So, in case the PT won't pan out, Sarah, try to "wrangle out "a referral for professional massages. It may work wonders!

Risa

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Post  Migrainegirl on Thu 18 Jul 2013, 5:20 pm

I did have bulging discs, but they were lumbar (very low back/buttocks) not cervical. Have you tried anything to help treat them, or are you exploring surgical options? I was unable to lift my toes correctly, and had some sciatica, so the neurosurgeon told me my best option was surgical removal of the bulging discs, so now I only have 60% of the disc on my L4/L5 and my L5/S1 discs.

I saw a pain specialist who did cortisone injections into the spine. That immediately relieved the tingling and much of the pain. Mine was C6/C7. Unfortunately I would still get the headaches. But I thought it was very effective for the bulging disk part of the problem. Much better than surgery. But it depends on how bad your situation is. My husband had to have a disk removed and the vertebrae fused.
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Post  Sara79 on Fri 19 Jul 2013, 1:58 am

Risa, thanks for the advise about the massage, I know it helps, DH and I will trade off back/neck rubs to help prevent muscle spasms.

My last migraine, I had a knot so tight in my neck that my primary and I decided to try a 'trigger' spot injection. He put a combo of lidocaine and a steroid into the muscle. It helped me soo much! Since it helped as much as it did he's thinking that I might be responsive to botox.

Migrainegirl- I'm glad the shots helped you! I was really hesitant about the surgery, but the neurosurgeon was insistent that the only thing that would fix stuff was surgery. I've learned later that's a common thing coming from a surgeon. I don't regret doing it, but I wish I'd pushed for PT or injections first. I refused to allow a complete discectomy and a fusion, I knew that would reduce my flexibility.

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Post  Sara79 on Mon 09 Dec 2013, 4:25 am

I just had my second appointment with my new nuero team, they are affiliated with the hospital I work at, unlike the one I saw at the start of this thread. I wasn't happy with my last two neuros, so I switched. The one lady seemed to think that going vegan and raw would cure everything. She's never tried most of the preventatives on me, because she was more worried about my weight than my migraines. The other was dragging her feet and she wasn't easy to communicate with.

The new team asked about preventatives, so I told them the first lady's logic...they agree with me that getting the migraines reduced might help me to have the energy to eat right and get some exercise, so I'm tapering up on propranolol. They were shocked that no one had ever had me try it. I like that they're systematically trying the things I've had success with, and are truely listening to me, rather than coming in with a predetermined agenda for me .

Tonight the head's been an angel, which is good, because I'm struggling with another ovarian cyst, and couldn't manage both tonight, my emotional rope's too frayed. (sorry anybody if that's TMI)

Take care ya'all

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Post  Cluelesskitty on Mon 09 Dec 2013, 6:53 pm

Glad to hear the new team is taking you seriously, Sara. I hate it when the doctors we put our faith in only patronize us, 'from above'.
Hopefully the propranolol will work wonders, for many it does. Good luck with it, Sara! Keep us posted Smile

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