Racing towards the end of my rope

bseder

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Hello,

I'm friends with Birdbomb IRL, and after hearing about my predicament she strongly suggested I come here and seek some advice (thanks Birdbomb!). I'm not epileptic, at least not that I know or any doctor has suggested thus far, but I'm in the middle of my second multi-week headache in 5 years. It's located exclusively on the left side of my head, just behind and slightly above my ear, with occasionally pains behind my left eye and near the left base of my skull (mostly up/behind my ear, though). In four weeks now, I've been to the ER once, the doctor (well, the physician assistant, my doc's apparently too busy to see me) four times, and Urgent Care twice during particular bad pain. the ER and and first UC visit got me little more then shots of morphine and compazine...second UC visit tried Toradol, some other anti nausea med, and after an hour of no diminished pain, another shot of morphine. All in all, the morphine knocked my pain down from a 7-8 to a 6-6.5 for not more than 30 minutes.

The ER said I had a migraine, sent me home with a rx for fioricet which really didn't do anything. The UC visit a few days later said my symptoms were inconsistent with migraine, and didn't hazard a guess on diagnosis...they did a CT scan and found nothing obviously bad in my head.

The physician assistant first guessed my problem was sinus infection and put me on a round of antibiotics, an allergy pill, an allergy nasal spray, naproxen, and midrin, but none helped. After I went back for a third visit and complaint, she referred me to a neurologist...who, thanks to the modern miracle of managed care, can't see me until the end of august :woot:

A little history on me...

I had no headaches until my late twenties, besides the normal ones that go away after an hour or three. I'm a combat veteran, but not in the US military, so the only veteran assistance I can get is if I packed up my family and returned there. During the course of my service I sustained a few injuries to my head, all but one was mostly absorbed by my helmet (which was a large rock thrown from a short distance).

I'd be grateful for any advice on how to help the neurologist do something other then try another bunch of medicines and throw ineffective pain killers at me. I've spent waaaay too much money on medicines that I've ultimately just thrown away after a week because they made me feel worse (in different ways/side effects)...in 2004 i was on topamax for a few months, and after a few weeks it started slowly helping...but took maybe two months before the headache was finally gone, and not just mitigated to a dull pounding. I know there's probably no overnight (or slightly longer) cure/solution, but after a month of dealing with this with next to zero relief, the thought of dragging it out that much longer is really a bit depressing and the stuff of desperation.

thanks in advance, and hello! glad to be here. i've been lurking a bit and reading, and i'm impressed with the body of knowledge (even though i wouldn't really know if you all were wrong ;)).
 

Birdbomb

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Friend of Birdbomb eh?


Told you this was a great place! :bigsmile: Glad to see you posting. I know many others here have lots of suggestions and possible causes. There is always tons of support.

BTW he had also seen my EX neuro a couple of years ago, who dismissed him as a lost cause (HA! money grubbing !@#$%^&*=+*!!! That neuro did that to several patients I know, anyway....)

SO all you migraine and headache sufferers, give this guy all you got.





 

Nakamova

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Howdy bseder!

I don't know if this applies to you, but there's something called chronic paroxysmal hemicrania. It responds to a drug called indomethacin. The link below has more info:

http://emedicine.medscape.com/article/1142296-overview


There's also a variant of this called SUNCT (you'll have to google it; I can't remember what its stands for) that responds to Lamictal.

I hope you get some answers and some relief soon.

Best,
Nakamova
 

bseder

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Thanks for the reply! My first UR visit sent me home with indomethacin, which I took for around a 10 days...it didn't help, and no matter how much food I ate before I took it, it did a serious number on my stomach (worse then naproxen and the antibiotic the phys-assistant put me on). But it's good to know that at least that doctor wasn't crazy, the next UR doctor said "what'd he give you that for, you don't have gout!" :)
 

Nakamova

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Have your doctors done MRIs to look for inflammation, or tested the cerebral-spinal fluid? Those tests can sometimes help rule in or rule out particular pain disorders. If the pain originates in a particular nerve or set of a nerves, a nerve block injection can provide relief. In cases of inflammation, steroids can also help.

Best,
Nakamova
 

bseder

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No imaging has been done other than the two CT scans done during the first UC visit...other then the phys-assistant tapping on my head and sinuses to diagnose sinus infection (didn't have one, apparently), and some bloodwork during the last UC visit, nothing has been done other then to inject morphine or prescribe this pill or that. All the docs I've seen in urgent care have said their chief purpose is to treat the current pain, not what's causing it...I can understand that, and I certainly appreciate their efforts. I'll ask the neurologist about the cluster headache options when I see him on august (fricking) 19th.
 

RobinN

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My migraines would begin at the base of my neck and upper shoulder area, then ache behind my left eye. I then would feel nauseous and be in a fetal position for four days. Most often I would feel better after I got sick to my stomach. However, the after effects would linger.

After 30+ years of trying all migraine meds known, a doctor suggested I try ionic magnesium. I have not had a migraine since. If a headache is coming on, I remember to take the mineral, and it usually ends the episode.

This is what works for me and has saved me from losing quite a few days a year in pain.
 

bseder

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Finally had my neuro consult...the new theory is it's an inflamed nerve in my neck. Half a dozen x-rays and an MRI of my gray stuff (presumably to make sure it's all still there), and a rx for prednisone, topamax, and xanax (to help me sleep and to help "relax my neck"...never heard of it used as a muscle relaxer before, but whatever).

My neck *has* been stiff, but no more then usual (I tend to be fairly tightly wound in general)...but I'm trying to remain optimistic.
 

Meetz1064

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Topamax can

and quite often does work for migraines, if you WANT to go the med route. However, there are some other migraine meds out there that work, too. There is another AED, Depakote, that works on both E and migraines. Only MAJOR side effect: possible weight gain (100+ lbs for me). But during the 7 years that I was on Depakote, I had VERY FEW migraines. And that's saying something, as I have a number of different kind of migraines.

Muscle relaxation is not the first suggested use of Xanax, but it can be used for that. :paperbag: If you get any side effects from the Xanax, ask for a different muscle relaxer. There are quite a few out there....

Actually, the MRI was to make sure that there was no scar/lesion/inflammation in or on your brain that would be causing the problem. :bigmouth:

Magnesium, as Robin suggested, DOES work quite well. And, because it's a mineral that our bodies are quite often missing, replacing it is definitely a good thing. I use it, and it does help limit my migraines even more. If you'd like to try that, start out at 200 mg, and you can slowly work your way up. Once you have *loose stools* (sorry if TMI) then you're taking too much, and need to back off.

You can also take a cold pack to your neck, that will help the nerves loosen up. (Best way I can explain). I do sometimes take a heating pad/Thermacare pad to my neck to loosen up the muscles, too. As a general thing, I tend to try to take a sock, and put a couple of tennis balls in it, then put it up on a wall, and put the balls around my neck, create some pressure, and let them rub against my neck. Some days, I lay on the floor and do it.

Sorry if that's too much, and overwhelming.

Take care.

Meetz
:rock:

PS. Don't forget to consider that you may have some type of food triggers going on too, that may be causing the whole problem....
 
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bseder

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Thanks Bernard and Meetz!

I'm definitely going to try the magnesium, and the tennis ball thing sounds worth a shot as well.

I've thought about possible food triggers, but my diet is fairly static...for the time being, our budget doesn't accommodate trying new and exciting things. I can't think of anything we've bought that's even slightly different from the norm, since we do our shopping in a kosher grocery store, there are only so many options :)

No worries on the TMI, I've got a year and halfish old son at home, and another on the way....I've seen and dealt with lots of poop in every shade and consistency it comes in ;)

Thanks so much for all the helpful and thoughtful replies, definitely taking all advice on board.
 

Meetz1064

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Yes, but

there are things in food that you wouldn't think that could be triggers that really ARE.

MSG, glutamate, aspartame, gluten (for some), caffeine, chocolate,......that's just the beginning of the list........you'd really be surprised....
 

bseder

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not my beloved caffeine :( i'll pay closer attention to what i've eaten prior to a ramp-up in head pain...so far it's seemed random, but i really haven't been paying attention to food/drink prior to it getting worse.
 

Meetz1064

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Lolol

Yes, I'm afraid your beloved caffeine is at the top of the list, unfortunately. Chocolate has it in it, too........red wine is another offender......... Sorry.......:paperbag:
 

Kween

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I see no one has mentioned colognes or scented cleaning products which happens to be one of my main sz triggers and if you notice on any cologne bottle it's the only product that doesn't list the ingrediants and why is because there's a neurotoxin called camphor and I have a website on it, but I'm not able to post it here they said. But it's something to look into for those wanting possible answers.

Sincerely
K
K
 

Meetz1064

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That's a

very good point, Kween, and one I totally forgot about. Thank you for reminding me, and pointing it out to others, too.:bigsmile:

Meetz
:rock:
 

RobinN

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When nutrition becomes "static" you can also develop sensitivities to a food that is eaten often. It is a very good idea to rotate foods, so you get a good selection of colored veggies, grains that are not contributing to the problem (such as rice and oats, quinoa, flax, a few others I am forgetting) You can develop allergies to grains and starches that are eaten all the time. Fruits should be considered, and reserve the really sweet ones to an occasional serving. Fruits and refined carbs can feed yeast which can cause neuro issues. Meat should be eaten in small amounts so that it is digested without problems. Enzymes can also be helpful to breakdown the proteins, that the body has difficulty with.

I understand the need to stay on a budget, that is why it is so important that nutrition be considered, so that wasteful spending is not needed on meds, and doctors copays.
 

MrFun

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bseder, I also definitely suggest going the indomethacin route. I tried it for a little while, it didn't help my symptoms at all, but it could be the thing you're looking for.

Definitely cut out the caffeine for a month or two (sorry), try to get an exact sleeping rhythm going (even on the weekend), avoid sweeteners and MSG like the plague. Just those factors can probably cancel out 50% of your symptoms.

Definitely get an MRI done instead of a CT, those generally work better for soft tissue problems.

It does sound like hemicrania in a way, but so did my symptoms. Recently I had my wisdom teeth removed, which as a result cause 3 seizures in 3 days. That whole region is so intertwined. I hope this helps or at least gives you another idea of what it might be, a hunch to go on is sometimes all we have.

Good luck! And don't forget that you get worse better you get better, so no more of that "end of rope" stuff ;)
 
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