Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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Diamox fatigue AGAIN - SORRY

deleted_user
deleted_user
Ok , I did what everyone said ...waited ! I just finished going through some papers at home and I am exhausted . The good days are not as many as the bad days . Is this honestly supposed to get better or will I always be this tired on the Diamox ? I am grateful that I am on it because of the good Op visit yesterday but geez ! I have two little boys !!!! They must think Mommy " went away " somewhere !!!! The docs says it takes time but please tell me honestly !!! Will this last as long as I am on it ? Diamox 1000 mg ER
(((HUGS)))

Thanks for putting up with my whining .
One more question ....and it might be TMI
When I have ...um ...relations with my husband ...I seem to have worse pressure for days ! Nothing crazy mind you ....just normal stuff (LOL)
Anyone had this experience ?

Faye
deleted_user
deleted_user
Sorry to hear you are so tired i felt the same way, i was on 500mg er twice a day for about 2 months . I didn't feel better until until the doc took me down to 500 daily. I don't know how long it will take your body to adjust i hope not long. I just had to go back on 1000 a day due to my paps im not feeling as tired as i was in the beginning. Good luck to both of us!
deleted_user
deleted_user
so sorry you are feeling poorly. I couldn't take the Diamox. It did it's normal number on me but regardless of how much fluid I drank I was severely dehydrated as it had me running for the potty every 5 mins. By day 8 I couldn't even hold my head up at the neuro appt. I'm on Topamax now, have both NO and neuro followup appts next week. I hope it is having the effect we are looking for.
deleted_user
deleted_user
Fayerae- Wish I could tell you about the Diamox, but I couldn't tolerate it so I was taken off, as far as the TMI question, absolutely!! That is horrid pressure, sad thing is there seems to be a cross point where the pressure and pain is the only thing that can be focused on and that shouldn't have to be. So you aren't alone there!
JT1973
JT1973
Don't know how long you've been taking it, but for me it took a good 6-8 weeks to get my energy back. I'm on 1000mgs too. I've been on it since June and I don't battle with the fatigue that much anymore at all. But, I also am lucky to not suffer from headaches. I'm sure if you are in pain on top of the medication it makes the fatigue worse.
deleted_user
deleted_user
Been taking it since Aug 17 ...been taking 1000 per day since about Sept 1 so ...around 4-5 weeks now on the 1000 mg . Sometimes I feel like I just can't even move . This usually happens after I "feel good " for a day and then it hits me bad with the fatigue . I am also taking potassium as mine was on the low end of normal . I appreciate everyone reading my rants about it ...I just can't get over the fatigue , it's awful .
deleted_user
deleted_user
I cannot get over the fatigue either. Glad to hear others say it gets better.
Hope it gets better soon!
JohnJay60
JohnJay60
This looks to be an old thread, but I just started diamox generic for glaucoma - 250mg 2x/day - awful first two weeks with serious joint pain and energy loss. Six weeks in, general muscle and joint pain improved somewhat but energy loss is still barely tolerable. I'd like to say it's improved the eye pressure, but the Doctor is trying several things at once so it's hard to tease out what's the biggest contributor.
BrittnieOwen
BrittnieOwen
I just started Diamox about 5 days ago for Pseudotumor cerebri my doctor started me low on 125mg twice a day for 3 days now I’m on 250mg twice a day for the next 30 days and so far I’m feeling a lot better my neurological symptoms with my Pseudotumor were very Scary for me and they were gone the first night of taking diamox as for today I’ve noticed I feel a little weird after my first dose for a hour or 2 then I feel great but at night around 7-8pm this fatigued hits me like a ton of bricks I can’t evrn stand long enough to take a shower I almost feel really high lol super relaxed which isn’t a good thing when I have 2 toddlers to tuck into bed so I’m a little worried :,( I hope this pill works for me! All of your comments have helped me relax a bit
ElleyOtter
ElleyOtter
@BrittnieOwen Heyyy, I also started Diamox recently (July 26) for PTC, but I'm on 500MG ER twice daily. My boys will be 2 (tomorrow) and 4 (on Monday) and I'm definitely too tired and blarghle-blurgh to keep up with them right now. My husband doesn't seem to understand and just thinks I'm being lazy. :/
Everyone's comments on it just taking a bit and some of the side effects of Diamox going away have helped reassure me a bit that this isn't just my life now - it get's better. *hangs on and waits for "better"*
Sophiasmom06
Sophiasmom06
omg your husband needs a wake up call on this illness. he has to get with the program or things are going to go south. I hope you feel better soon. I could not tolerate even 125mg twice a day of Diamox. it made me feel the way IIH makes me feel, so no point for me. I never had papilledema.
ElleyOtter
ElleyOtter
Haha thanks @Sophiasmom06
I was having daily episodes where I'd lose the center of my vision for an hour or two at a time, so while the side effects of the Diamox suck they're better than going blind!
LauraMae
LauraMae
Omg @ElleyOtter! I had a couple of episodes where I lost vision in the center but only lasted for about 10-15 min. I thought it was ocular migraine and went to see the doctor for pulsatile tinnitus and that’s how they found the IIH. They didn’t think I had it because my weight is normal but a spinal tap confirmed high pressure. I’ve been on diamox since 7/30/18 and boy does it make me tired!!! The soft whooshing sound in my ear now sounds more like a crazy washing machine with a person lamenting inside but my eyes don’t feel squished like before. I’m on 500mg twice a day and they told me they might have to increase it if the papilledema and ear sounds don’t go away.
dg0309
dg0309
I’ve been on and off Diamox for 5 years for macular edema. If Have found the extended release SO much easier to handle than the original one. The original one was awful. Anyway the extended release one isn’t fun either, I just started 1000mg up again a few days ago and I am super tired. I think it all goes away after a few weeks though!