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 How do you know if your in REMISSION?

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Jewls27
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PostSubject: How do you know if your in REMISSION?   Sat Aug 25, 2012 2:57 am

How do you know if your in REMISSION?

Hi everyone, havent been on in awhile, sorry about that. Trying to get my headaches under control, have gone on 2.5 weeks of headaches.
My question is How do you know when you are heading towards remission? I had an Ophthalmologist appointment the other day and he said my optic nerves are no longer swollen Smile!!! i was so excited! but confused because im still having headaches? so i guess its kinda 2 questions. sorry if it sounds confusing....im confused..... 😕 Julie
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Wylee
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PostSubject: Re: How do you know if your in REMISSION?   Sat Aug 25, 2012 3:17 am

Go to see you back, Julie.
Your questions are very resaonable. I think that the actual definition of remission is when there are no longer any symptoms of the illness. It is great news that your pap is gone, now you need to get those headaches under control. Keep in mind, sometimes our pressures can swing the other direction and turn into low pressure headaches. Have you been keeping track on what triggers them? Are they worse when upright and better when laying flat? Have you recently changed anything, your diet? your exercise routine?? Just some things to think about.
I hope that you will be able to get those headaches to stop. Be sure to ask your docs about it. It may mean a tweaking of your meds are in order, just to get past this little hurdle.
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Sophiasmom
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PostSubject: Re: How do you know if your in REMISSION?   Sat Aug 25, 2012 5:28 am

hi Julie;
there is such a thing as IIHWOP: IIH without papilledema, which I have. it is completely miserable even without the eye problem. I suspect I don't have pap because my pressure is not consistently super high, usually in the borderline range although it still causes me great fatigue. also I think there is something about the anatomy of the eye that either allows the pressure to be transmitted to the retina/optic nerve or not, but I haven't studied this in great detail. I had eye symptoms 2.5 yrs ago, prior to beginning to treat my sleep apnea, although in retrospect it was diagnosed as ocular migraine. I had been on CPAP for a month by the time I saw the ophthalmologist for my annual, and no pap was seen. no one had any clue about my IIH at that point. I was stick thin, btw, too. I do suspect I had some pap at that time but the eye symptoms have not recurred as long as I treat my sleep apnea.
Deb
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morrise
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PostSubject: Re: How do you know if your in REMISSION?   Sat Aug 25, 2012 1:43 pm

Hi Julie, I was in remission before for a year. All my symptoms were gone and I wasn't on any medication. My eyes were good from about 4 months before, I was reducing my diamox over 3 months until I was off them completely and I had no headaches for 2 months and my last LP before then showed my pressure at 14. This is when I was told I had gone into remission. Your eyes coming back clear is a good sign. Are still on medication or have been reducing it??
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medmisfit
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PostSubject: Re: How do you know if your in REMISSION?   Sat Aug 25, 2012 2:05 pm

It may very well mean you're on your way to remission..pap reduced, so headaches could follow. Remission is really an absense of symptoms w/o treatment, so I'd guess you're getting IIH under control..which is huge victory in itself! It may just take time for your body to fully adjust to treatment, meds could be just enough to save vision, you could be having IIH w/o pap, you could be having low pressure or another form of headache..it's so confusing because it's always changing and different for everyone. I think you just have to celebrate the victories like saving your vision, & keep plugging. I agree w/ Linda & would make sure you're keeping a food/symptom log to identify possible triggers & track progress..it may help you & doctor figure out the next step in treatment.

I'm so glad he pap is gone, now hopefully you'll find some relief from pain!
Take care, and keep us posted.
Julie
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Jewls27
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PostSubject: Re: How do you know if your in REMISSION?   Sat Aug 25, 2012 4:34 pm

Thank you everyone for responding Smile What triggered this headache was a crying spell, before that i was headache free for 9 days prior Smile Now i have had one for 2.5 weeks. most part its just just a bad headache that gets worse if i do anything, but at some points they did get bad on there own and they did get better on there own. but have never gone away yet. Nothing has really changed in diet except for lake of eating while im at work cause i dont have time. 2 weeks ago we just upped my dose of Topiramate to 150mg twice a day due to the headaches. Had a LP 2 fridays ago and opening pressure was 24, so it was lower than last one which was 37, so thats good. But the recovering from that was HORRIBLE :( the moment she took the needle out i had the worst headache EVER! and had it for like 2 days had to go to work with it 1 day and when that was gone i was back to my normal headaches ( the reason why i ordered the dam LP to begin with! so it didnt even HELP :() So i dont kno why im getting these headaches or how to get rid of them :( Someone suggested that it could be the MED? but if it is then what wld they do?since its helped so much with my eyes?

I havent talked to my Neuro since my Eye exam the other day so im not sure what she will say about the No Pap and reducing Meds or keeping me on meds for awhile or what she thinks about my headaches now.....we even tried imitrex (migraine meds) to see if i was having migraines but that didn't even help them! lol maybe im broken :( i hate the feeling i have a 5 year old i have barely been outside all summer cause the sun makes it worse.....

Im hoping that no that my eyes are clear that my headaches will clear soon Smile I will keep hoping for that and if not i will hope they find a med dose to relieve the headaches

Thank you everyone for responding Smile
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Sophiasmom
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PostSubject: Re: How do you know if your in REMISSION?   Sun Aug 26, 2012 4:25 am

oh god, DON'T CRY! it creates a horrific valsalva and will make you sick instantly. just let the tears run down and KEEP BREATHING!!! hyperventilate if you have to, it will help.
Deb
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medmisfit
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PostSubject: Re: How do you know if your in REMISSION?   Mon Aug 27, 2012 8:39 pm

Julie, I'm sorry you're struggling! I'm guessing the LP headache was low pressure..definitely not any fun, but usually better when laying down. I did actually get worse headaches w/ the Topiramate and didn't even last a couple days, but they improved as soon as I stopped taking it. I would definitely talk to your neurologist about it. It's encouraging that it's helping your pap, but your headaches should be getting better not worse. There are other meds to try, so don't lose hope..should be easier to manage if swelling is already down. Migraine meds won't touch high or low pressure headaches, so I'm not surprised you found no relief. I'd trying laying on your side at a 45-60 degree angle and use hot or cold packs on your eyes. For some reason the added pressure helps alleviate some discomfort for me. Also, try to drink something w/ caffeine to see if it takes the edge off. These aren't longterm solutions and vary for everyone, so you may need to play around to find things that help you. I hope you find some relief soon!

hug
Julie
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Wylee
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PostSubject: Re: How do you know if your in REMISSION?   Mon Aug 27, 2012 10:29 pm

Julie, medmisfit Julie gave you some excellent suggestions. I know I feel better when I am laying down at about a 45 degree angle!! Give them a try and see if anything helps. ;)
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Jewls27
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PostSubject: Re: How do you know if your in REMISSION?   Tue Aug 28, 2012 6:52 pm

THANK you ladies i will definitly give these suggestions a try Smile they seem to be getting better finally, not going away tho BUT BETTER! i was able to clean partial part of my house without getting a huge headache for once Smile it felt so nice, usually i get horrible headaches, hopefully this means my headaches will be gone soon Smile thank you for your support Smile
XXX
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medmisfit
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PostSubject: Re: How do you know if your in REMISSION?   Tue Aug 28, 2012 8:50 pm

:well done that's great news Julie! Thanks for the wonderful update.
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