Question:
On Sat, 06 Nov 1999 02:52:28 GMT, "Julia Fridman" <jfrid…@mediaone.net> wrote: >KC- >I noticed that you mentioned that you had pretty bad migraines…I’ve been >trying to get more info about them because mine are driving me nuts. What >did you do for them? >-julia
Hi julia… I take imitrex for them. "miraculously" they have abated after 6 months of constant migraines. I have only had two in the 5+ weeks since I started Plaquenil. Coincidence? Placebo effect? I don’t know but I have always suspected my migraines were not "true" migraines (in most cases) but were a manifestation of inflammation of the meninges or blood vessels in the head. I’ve had "true" migraines many times too (when I was badly addicted to caffeine). it’s odd that it seems to take different things to kick them. Usually the imitrex works for about 80-90% of the headache. But there is lingering pressure and pain that I can then get rid of with a combination of 1/2 Lortab (5 mgs vicodin/250 mgs acetamenophin total) and 1/2 Excedrin. My doc (rheumy) did want me to go on a beta blocker as preventive medicine – however a frank discussion with my PCP about my low blood pressure and fainting spells made her feel very strongly that this was the wrong idea. However, if you have solid b.p. (mine is rarely above 100/60 and usually 90/60 or lower) or even slightly high, then this might help you. It may take experimentation as some people get relief from beta blockers and others don’t. Of course, one has to take into consideration the adverse effects of these drugs and that varies from drug to drug and person to person. One common side effect is slowed heartrate which can cause fatigue and sluggishness. So it largely depends on what is right for you. Talk to your doc about these possibilities. Currently the three most reliable migraine meds on the market are Imitrex, Maxalt and Zomig. But again, their are side effects and some people have severe allergic reactions (it is recommended that you be under supervision for the first dose – my sister had what amounted to a siezure due to her first dose of this). There is also Caffergot which helps a lot of people. It’s an "older" drug so it doesn’t get as much publicity but that doesn’t mean it isn’t effective. OTC, the best thing that’s ever helped (but not necessarily stopped) has been Excedrin though there are some indications supposedly that this drug (combination of aspirin and "tylenol") can lead to problems too. The key is moderation. I only take this med once or twice a month now… when the migraines were in full swing it was 4-5 times a month with Imitrex. BTW, there is no need to get "Migraine" Excedrin vs. Extra-strength Excedrin. They are *exactly* the same formula, just different labels. Most stores sell them at the same price but there may be some that charge more for the "migraine" box just to fool people. HTH. KCat
Response:
Got my lab results back from last month. All my numbers were good. Was actually shocked to find that I’m not anemic (13.3) given how little I’m eating and how low my b.p. is. My ANA is still positive but only 1:80. So it appears that the pain and fatigue I am dealing with are a) all in my head b) due to the FMS, IBS, poor sleeping (one or all of the above). I have been taking good care of myself in other aspects (not getting out in the sun, not overworking myself physically etc.) Bless hubby’s heart. After I told him the labs were good he said "so you might not have lupus after all…" I was angry at first – as if I haven’t just been through all this hell for the past 5 years. Rashes, Raynauds, costochondritis, severe joint pain, high ANA, migraines out the wazoo, constant fevers… But I calmed and said. "no… all this tells me is that I’m probably in remission and that my symptoms now are probably attributable to other causes" he immediately said he didn’t mean that to say the way it sounded that he knew I still had lupus but that he just meant that it wasn’t causing immediate problems. Husbands can really "talk wrong" when they’re tired. I am down to 50mgs of Trazadone again after discovering that 100 mgs dropped my b.p. to dangerous lows and had me blacking out almost every time I stood up (10-12 times a day!). Still get faint now and then but not as bad. Have been on Plaquenil a month now… am not getting the near constant fevers (have had *1*) – don’t know if that’s the plaq. already helping or if it’s just coincidence. Guess we’ll know in a few months eh? trying to find a doc to check my eyes out to keep track of that. Also have only had 2 migraines in that month (compared to avg of 4 a month). I will have to disagree with my rheumatologist that my migraines are not CTD-related if this trend continues or if I come off the plaq. and the migraines come back. She wanted me to see a neuro and start on a beta blocker to treat the migraines – but given that my b.p. is normally low (100/60) and the way the Trazadone lowered it to 80/50! - somehow it seems that beta blockers would be just as problematic as the Trazadone. Anyone with similar experience can let me know. Did a little detective work to find out what was causing the low b.p. but within 5 days of coming off the doubled dose I became stronger again and with far fewer "brief losses of consciousness" (as the PDR describes it). I guess if I ever develop hypertension I’ll know how to treat it eh? IBS is still tough – very tough. If it really is IBS. The GI Doc also gave me advice on some things to eat that would be helpful that shouldn’t make me spasm or throw up. Yesterday my esophagus spasmed shut in the middle of my favorite chinese restaurant and I lost most of the chicken/rice that I had eaten. :( (fortunately was able to get to the ladies room first). Today being more careful – Ensure yummmmm (not). So that’s just an update. Thanks to everyone for being supportive. I hope that this is a trend I can continue and that I will be able to go back to work when my daughter graduates high school (2001!). KCat
Response:
As you probably know, while partial remissions are very common, complete remissions are rare. Therefore, I’d guess the few symptoms you’re still having aren’t in your head, though I couldn’t say what specifically is the cause. Also, ANA numbers have little to do with how you feel. Heck, even lab results in general don’t always have much to do with how you feel. That doesn’t mean it’s all in your head either. Glad you’re doing better right now though and I do hope the improvement continues a good long time. Sandra
Response:
I know just how you feel. Why is it that bloods are done when you are in remission? It is like you have to prove that you are ill! In England they are not so much into tests as they are too expensive. I just know when I am ill. I was really lucky to get a consultant at a hospital here that could tell from joints and other symptons what the problem is. Keep going I have a daughter that was a real problem at 14 but is now 21 and wonderful! I am looking forward to stopping work but I am having a battle with my employers over my disability. All the best Sara – Hide quoted text — Show quoted text -KC wrote: > Got my lab results back from last month. > All my numbers were good. Was actually shocked to find that I’m not > anemic (13.3) given how little I’m eating and how low my b.p. is. My > ANA is still positive but only 1:80. So it appears that the pain and > fatigue I am dealing with are a) all in my head b) due to the FMS, > IBS, poor sleeping (one or all of the above). I have been taking good > care of myself in other aspects (not getting out in the sun, not > overworking myself physically etc.) > Bless hubby’s heart. After I told him the labs were good he said "so > you might not have lupus after all…" > I was angry at first – as if I haven’t just been through all this hell > for the past 5 years. Rashes, Raynauds, costochondritis, severe joint > pain, high ANA, migraines out the wazoo, constant fevers… But I > calmed and said. "no… all this tells me is that I’m probably in > remission and that my symptoms now are probably attributable to other > causes" he immediately said he didn’t mean that to say the way it > sounded that he knew I still had lupus but that he just meant that it > wasn’t causing immediate problems. Husbands can really "talk wrong" > when they’re tired. > I am down to 50mgs of Trazadone again after discovering that 100 mgs > dropped my b.p. to dangerous lows and had me blacking out almost every > time I stood up (10-12 times a day!). Still get faint now and then > but not as bad. > Have been on Plaquenil a month now… am not getting the near constant > fevers (have had *1*) – don’t know if that’s the plaq. already helping > or if it’s just coincidence. Guess we’ll know in a few months eh? > trying to find a doc to check my eyes out to keep track of that. Also > have only had 2 migraines in that month (compared to avg of 4 a > month). I will have to disagree with my rheumatologist that my > migraines are not CTD-related if this trend continues or if I come off > the plaq. and the migraines come back. > She wanted me to see a neuro and start on a beta blocker to treat the > migraines – but given that my b.p. is normally low (100/60) and the > way the Trazadone lowered it to 80/50! - somehow it seems that beta > blockers would be just as problematic as the Trazadone. Anyone with > similar experience can let me know. Did a little detective work to > find out what was causing the low b.p. but within 5 days of coming off > the doubled dose I became stronger again and with far fewer "brief > losses of consciousness" (as the PDR describes it). I guess if I ever > develop hypertension I’ll know how to treat it eh? > IBS is still tough – very tough. If it really is IBS. The GI Doc > also gave me advice on some things to eat that would be helpful that > shouldn’t make me spasm or throw up. Yesterday my esophagus spasmed > shut in the middle of my favorite chinese restaurant and I lost most > of the chicken/rice that I had eaten. :( (fortunately was able to > get to the ladies room first). Today being more careful – Ensure > yummmmm (not). > So that’s just an update. Thanks to everyone for being supportive. I > hope that this is a trend I can continue and that I will be able to go > back to work when my daughter graduates high school (2001!). > KCat
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