Does anyone else here get migraines?

[ncrainbowgrrl]

If so- any interest in starting a new DU Migraine support group? Perhaps it would be an absolute bust, but I know that I get into a strange mood just as one hits, and it's not something that's easy to explain to those who are lucky enough not to have to deal with head pain.

[smitty]

1. I used to get migraines then I retired and they stopped. Hmmm.

[file83]

55. Take this "Migrain Test" by the MIT Cognitive Department....

If you continue to see movement for more than 30 seconds then you might be predisposed to migrains.

:evilgrin: :rofl: :rofl: :rofl: :evilgrin: :rofl: :rofl: :rofl: :evilgrin:

Have a migrain yet?

[Strong Atheist]

2. I got some for a while. It turns out, in my case, that completely

getting rid of caffeine from my diet made the migraines go away...

[LanternWaste]

3. Do Cluster's count?

I get the migraine's bastard cousin, Cluster's.

Actually, we cluster sufferer's laugh at your puny resistence to pain.... "YOU CAN'T HANDLE THE REAL THING!!!!"

Sorry. It's a Migraine vs. Cluster thing... kinda like the Kirk vs. Picard threads or the "Only Good Star Wars Movie Made" vs. the "other five pieces of crap that came out afterwards". Screw it. I'm not funny this afternoon. I'm gonna shut up and clean my desk off before I leave the office.

[ncrainbowgrrl]

18. How about a "Headache forum?"

Would this feel more inclusive?

I'd hate to leave someone out that has some interest in participating. :hug:

[Kali]

54. I don't know about a forum (there are probably plenty already out there)

but I have had a regular headache all damn day. I do get migraines occasionally - my sympathies to regular sufferers they are a bitch.

[barb162]

51. yes!

[flamingyouth]

4. I would definitely be interested.

:hi:

[BlueIris]

5. If I skip my morning caffeine jolt, or don't re-up at five p.m., yeah.

And they bite like nothing else. Including my menstrual pain, which, before I had a real migraine or two, was my worst, most incapacitating pain ever. I'm lucky that I can control my migraines.

I think a support group would be a great idea. There's NOTHING more frustrating than not having the support of fellow migraine sufferers if you must endure this condition. I would also think it would be a great place to discuss different treatment strategies, especially on the prevention front. Thankfully, having identified my triggers, I basically never get them, (sorry, all you migraine-victims--I know, it's horrible) so I never have to resort to medication. Finding the right one for you and your migraine type can be damn tricky. The only thing that's really worked for me is Relpax. Imitrix is...not my friend. Maxalt was okay for a while, but only if I took it early on in the development of the migraine. Relpax is awesome. Very few side-effects, worked completely even though the two times I had to use it, I was well into the migraine before I could get to a proscriber or the actual pill. It also put the breaks on the bounce back effect the next day. It's not cheap, but who cares about that when you have migraine? I think it's just great that it works. And those are the kinds of things migraine patients might benefit from discussing, within the boundaries of DU rules, that is.

[fight4my3sons]

6. I did until my neurologist put me topamax.

I'd be interested in a group though. If he takes me of the meds I'm sure they would come back :-(

[flamingyouth]

21. I am on Topamax too.

Thank you, thank you, thank you, Topamax...

[BlueStateGirl1995]

24. I take Topamax

but it makes fizzy drinks taste weird. That happen with anyone else?

Just curious...I'll take being migraine free over soda any day!:7

[flamingyouth]

27. Yeah, I don't like fizzy drinks anymore.

Yuck. But that's okay. Like you said, being basically migraine-free... well, that's a small price to pay. :D

[fight4my3sons]

43. YES!!

All carbonated drinks taste like CRAP!!

My fingers and toes also get tingley a lot. More when I was first taking it. My sister takes it for a seizure disorder (she had a brain tumor) and her tongue gets tingley.

[fight4my3sons]

44. We chatted in the other group :-)

:hi:

[ThomCat]

38. I had to quit the topamax.

It was interfering with my sleep. I was having very vivid, sureal dreams that kept waking me up every 15-20 minutes. I was never getting past dream sleep into deep sleep, so I was getting more and more exhausted every day.

I hear of people who swear by topamax, but that stuff was poison for me. I couldn't function anymore after 1 week on it.

[fight4my3sons]

42. Couldn't take any of the other medications for migraines

due to stroke/TIA risk. I have a blood clotting disorder. The only thing I noticed was that my fingers and toes tingled and carbonated beverages taste like crap now.

[trof]

7. Yep, opthalmic.

Sometimes brought on by bright sunshine.
I've become a vampire.

[AlCzervik]

8. i do about 2 or 3 times a month, really bad ones

they always start behind my left eye and that when i go upstairs, shut the blinds get a bucket and lay down and try not to move. I notice the worse ones are when the weather has a big shift.

[KitchenWitch]

9. I get migraines

I would be interested in a group.

[skygazer]

10. I get them

Not as often as I used to since I've identified several of my triggers. I can't stay up all night - that will trigger them. Also, a change in air pressure often will - if there is a lot of humidity in the air, I get a migraine.

You're right - it IS hard to explain. It's not like a regular headache - it's more of a full body illness that lays you right out. Employers are often unsympathetic (I'm fortunate that mine is one of the good ones) and friends often think you're exagerrating. People often claim to get migraines when you know darn well they've just got a bad headache - if it were a migraine, they'd be squinting in the light and whispering while looking green around the gills.

I like the idea of a support group. I would certainly be a part of it.

[AlCzervik]

11. yup, they are totally debilitating and as you know there is no mistaking

when the first sign hits, you're out of commission for at least a day, sometimes 2.

[skygazer]

12. I see the weather affects you too

My doctor looked at me rather oddly when I mentioned that but my doctor is (was - she is no longer my doctor) a quack.

I have this aromatherapy eye pillow I got a while back that is really soothing - it's full of lavender and other herbs and it's kind of cool and nice on my eyes (and it blocks out the light - a good thing). It doesn't cure them by a long shot but it helps a bit.

Even to cry hurts when you have a migraine. :cry:

[AlCzervik]

13. when i lived in Houston thats when i noticed the pressure thing

it was always so firring humid down there that i was getting them almost once a week, it's better now since we've moved and where we live is pretty dry but now it's rainy season and i'm getting them more frequently.

thanks for the tip on the pillow, i'll check out bath and body works.

[alarimer]

14. I just thought about this this week

I am not sure mine are migraines but they are defintely worse during a change in the weather. This week it started as a bad sinus headache that lasted until a cold front passed and the barometric pressure rose.

[AlCzervik]

16. i bet it was the pressure, i never even knew that could trip a migraine

until i moved and got so many i finally went to the doctor.

[alarimer]

20. I know that my headaches, whatever they are, are worse

when it is hot and humid. I have had more sinus and allergy-related problems since moving to Florida actually and they have gotten worse here in Texas. I have had these headaches at least since high school but they are worse and more frequent. maybe it is my age or something too.

[barb162]

53. do you get auras/ coronas and heightened hearing

[FuzzySlippers]

15. I get them. Not as often or as bad as I used to, fortunately.

I'd be interested in a group.

[bmbmd]

17. I've had a few.

Some caused by altitude. One involved cheese, chocolate, red wine, and an anniversary celebration in a hot steamy shower.

[khashka]

19. I used to have them a lot

Now once a year or so...



I'd rather die!

One minute you are this fierce warrior and the next youre just someone puking their guts up.


When I get 'em I get 'em bad - emergency room, Demerol......


Khash.

[theophilus]

22. I used to have ocular ones. They stopped when I quit consuming

aspartame. I also left Texas at the same time so that might have been the real reason! Anyway, no fun to have those.

[REP]

33. I Have Ocular Migraines - No NutraSweet, Ever and No Texas!

I've never been a user of NutraSweet (aspatame) because of my kidneys, but I am at least the third generation of women in my family to get them. Oddly enough, we all 'see' the same aura as we're going blind - like circular sawblade of neon lights. I had my first one when I was in my 20s and my first thought was "I CAN'T be haing a stroke! My BP is too damn low!" and of course, I wasn't, but going blind like that is scary as hell. At least it is the first time! I still hae to hae my retinas checked every time I have one; same ocular migraines 'look' like detached retinas, and being extremely nearsighted and having classic and ocular migraines puts me at an ewen higher risk for detached retinas. (Anyone with a history of frequent migraines needs a retinal check eery 2 years.)

[theophilus]

39. Yeah, it is probably different for everyone. Or, there is no

relation and I just guessed wrong. Anyway, sorry to hear of your problem. I hope you never have another one. I always saw a little wiggly lightning bolt like thingy off to the left of my left eye. I am pretty sure my mother had them, too. I wondered if I was having a stroke, too, when I had my first one. I remember when I was really young and almost blacked out. Everything got "white" then and I had to sit down by a tree on the playground. I don't know if that was related but our bodies can throw some crazy stuff at us for various reasons. Frustrating as all get out!

I am also extremely nearsighted. I wonder if there is a connection there??????

Thanks for the info.

[Sgent]

23. Cluster headache's here

And possibly migrains (I have visual disturbances, family history), but definately cluster headaches.

I now keep an oxygen tank at home. The second one starts, 100% oxygen (which is approved treatment for clusters), a strong narcotic, and bed. Its usually over in 3-4 hours.

The non-narcotic drugs (inc. the injectibles) seem to be worthless for me.

[LanternWaste]

36. Is a prescription neccesary for the O2 tank?

Is a prescription neccesary for the O2 tank? What's the cost?

Right now, I'm limited to putting my face two nches away from the A/C vent...

[Sgent]

41. Yea, you need a script

to fill a tank, but not to buy it. You also need a script for the regulator.

Most insurance will cover them under their DME (durable medical equipment) coverage -- but even if not you should be able to negotiate a reasonable deal -- especially if you buy (rather than rent) the tank.

Oxygen is the one treatment specifically approved for the treatment of cluster headaches. It aborts a huge percentage almost immediately.

[Starlight]

25. Yes. They used to be almost totally debilitating.

For many, many years I took numerous prescription medications that did little or nothing to prevent or relieve my severe & continuous migraines. I visited a long series of specialists and had every expensive test they could think of, but nothing ever helped. The headaches/illness never went away; my health varied between barely able to drag myself through the day and too sick to even think about trying to get out of bed. :hangover: :hangover: Every aspect of my life was seriously affected. :cry:

But now I'm a lot better. :) I've been taking Nature's Way Mygrafew 2 times a day (double the usual dose) for about 10 years, with my doctor's blessing. It doesn't completely prevent the headaches, but it works MUCH better than anything else I've tried and with absolutely no side effects. And the price is right, too. :woohoo: :woohoo: :woohoo:

[hippiechick]

26. I used to ...

... and when one hit, being on DU was the furthest thing from my mind !

Finally last fall, after keeping a headache journal for several YEARS and making countless trips to the ER, my doc finally agreed with me that they were hormonal and figured out that I'm in estrogen withdrawal. And when my tank gets just a smidge too low, a puking migraine kicks in.

He Rx'd me an estrogen patch to wear 6 'specific' days a month, and thus far - since last August - I'm migraine free.

:hi:

[Lydia Leftcoast]

28. With me it's air pressure

The worst part is being miserably nauseated.

[NMMNG]

29. I've had chronic intractable migraines since my early teens

Since then I've been trying to find a good treatment plan and am still working on it. As you probably know it's more than simple head pain, which is something most non-migraineurs just don't understand. That's why it can be so frustrating to deal with bosses, family members and partners who wonder why we can't "just take a Tylenol and get on with life".

I think a DU group would be a great idea. :thumbsup:

[ncrainbowgrrl]

30. I see that we have the 10 "starred members" to start a group.

Now all we need is a mission statement.

Does anyone want to give writing a mission statement for our group a shot? If no one wants to, I could try,... I just feel so inadequate, as many of y'all have been dealing with this for years, and here I am- the newly formally diagnosed- just presuming that I'd even begin to know what the experience has been for others, and how it's affected other people's lives.

Take care all

[ncrainbowgrrl]

35. Proposed mission statement: (Please feel free to edit!!!)

Severe Chronic Headaches can be unpredictable, unforgiving, and are usually understood only by those directly affected, and those allies that choose to inform themselves about these real neurological conditions. This forum would give Headache sufferers a place to talk about the implications of these diseases in a separate place where our concerns could be aired in a safe space dedicated to this particular issue.

[Robeson]

31. I used to get them all the time. I get them on rare occasions now...

...and as I'm sure you know, I know when ones coming.

[REP]

32. I'll Support You Starting a Group

But when I'm getting/having a migraine, I don't mich feel like writing about it! Before starting on Elavil and Topamax, I had 2-3 migraines a week, each lasting at least 72 hours and causing partial vision loss (I also have optic migraines which don't hurt, but cause complete, but temporary, blindness in one eye). Now that I'm drugged to the gills, I only get about 1-2 a month, and they're not as severe (mostly because I'm better at catching the auras, which look like 'floaters' in me, and take handfuls of Fiorinal. Which reminds me...).

[DainBramaged]

34. I used to get them so bad I would throw up or go blind for hours

20 years of doctors and worthless medicines. My triggers were perfumes and tannin in wine. Sometimes diesel fumes or stress. Then they discovered and removed my brain tumor.

25 years later, I haven't had one since the bugger was taken out Aug. 29 2000.

Please don't think you may have one. But pituitary tumors in men are rare, and are easily missed by 99 & 44/100's of the doctors out there.

[ThomCat]

37. I get them frequenly.

I had one for 3 days earlier this week that even the Relpax couldn't tackle, and usually that helps a lot.

I've had chronic pain from a disability for 15 years so I'm used to pain. I no longer show pain like most people. I can be in pretty serious pain (level 4-5) and people won't be able to tell by looking at me. (except for my reaction to sudden stabbing pains)

But migrains are different. Everyone can always tell when I'm having a migrain. I turn pale and I look like I'm in a bad mood.

[undeterred]

40. 23 years of migraines

makes me an expert. I am on daily preventive meds now and its working pretty well for me. Still, I never go ANYWHERE without my imitrex. I am glad for this wonder drug but the price is infuriating.

[madokie]

45. I have the aura of migraines pretty regularly but the pain only 3 times

that I can remember. The last time it lasted for 5 days, and trust me it was 5 days of sheer hell. I can always tell when it is going to happen because the back of my neck gets all stiff.

[ncrainbowgrrl]

46. Proposed mission statement for group: (Please feel free to edit!!!)

Severe Chronic Headaches can be unpredictable, unforgiving, and are usually understood only by those directly affected, and those allies that choose to inform themselves about these real neurological conditions. This forum would give Headache sufferers a place to talk about the implications of these diseases in a separate place where our concerns could be aired in a safe space dedicated to this particular issue.


Once we can all agree on a mission statement, we can take the next step in getting a group established- contacting the admin and letting them know that we're here, we've gpt numbers and we're ready to go.

Anyone want to help edit my mission statement? I know it can't be perfect. Please- some advice/help!

Thanks

[Mutley]

47. Just once.

Worst pain ever.

[samplegirl]

48. I read that if you take magnesium

right when you feel it coming on it will stop it.

[spinbaby]

49. I've had good luck with Norvasc

It's a calcium channel blocker and keeps the migraines from starting. My insurance company just decided it's not in their formulary so I'm about to start taking some other brand. If I start getting migraines again, I'm going to be really pissed.

[Sanity Claws]

50. Yes

I've suffered from them for about ten years. It took a while to get diagnosed and only recently have I been able to find most of my food triggers. Since eliminating eggs, carrots, nightshade vegetables, peanut butter and a few other items, my headaches have decreased about 90%

[barb162]

52. I did and am happy to report not in several years

[adriennui]

56. i haven't had a migraine

since i quit my office job and began freelancing and working from my home.

migraines may also be caused by hormonal changes during the menstrual cycle.


i was almost addicted to fiorinal in those days.