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...
I have spoken to several of you who, like me , suspect that a drug triggered your IH. For me, it was a 14-day course of 500 mg/day Levaquin. My symptoms are constant ear pressure, forward head achiness, stiff/hard-to-move eyes, sore eyes, crazy visuals (grainy vision/used to have lots of dark and light sparkles/murky/focusing issues/trouble with light and dark transitions, etc), and fatigue. I have embraced a low salt, low sugar, no caffeine diet. I drink only water. I have noticed that my symptoms have gotten noticeably better since I increased my blood pressure medication and got my blood pressure below 110/70 or so. I am on 500 mg Diamox 2x/day.
So, my question is for those of you who suspect a drug link. If you feel up to it, I would be interested in learning:
1) what drug/dosage do you think triggered your IH?
2) How soon did symptoms present?
3) What are your main symptoms?
4) What treatment are you on?
5) How long did it take to get relief and have you been able to maintain the relief?
6) Did you ever manage remission?
7) Is there anything special that you do that you think helps you manage the symptoms?
8) Are you an "allergic" person? Penicillin? sinus problems? I am allergic to penicillin and have had terrible sinuses all my life. Oddly enough, my sinuses dried up when I got sick with the IIH. I never had sinus infections, though.
And really, any other thoughts on this topic are welcome! I know there have been other threads with some of this info, but I don't remember seeing one that rolled all of this into one. Anyway, I am sorry if I am overkilling this topic.
Mark
So, my question is for those of you who suspect a drug link. If you feel up to it, I would be interested in learning:
1) what drug/dosage do you think triggered your IH?
2) How soon did symptoms present?
3) What are your main symptoms?
4) What treatment are you on?
5) How long did it take to get relief and have you been able to maintain the relief?
6) Did you ever manage remission?
7) Is there anything special that you do that you think helps you manage the symptoms?
8) Are you an "allergic" person? Penicillin? sinus problems? I am allergic to penicillin and have had terrible sinuses all my life. Oddly enough, my sinuses dried up when I got sick with the IIH. I never had sinus infections, though.
And really, any other thoughts on this topic are welcome! I know there have been other threads with some of this info, but I don't remember seeing one that rolled all of this into one. Anyway, I am sorry if I am overkilling this topic.
Mark
2) symptoms started within a month or two: pulsatile tinnitus and papilledema
3) pulsatile tinnitus and headaches
4) nothing currently: serial LPs and diamox in the past
5) rarely don't have a headache, but little relief from prior treatments
6) would say I'm in remission now, even with the headaches and tinnitus, no papilledema or migraines
7) Diet, exercise and regular sleep schedule
8) yes: biaxin, celcor, erythromycin... almost any antibiotic if taken longer than 14 days
I try to not take OTC pain meds... began getting headaches from the daily use of them
Levaquin 500mg x 10 days pretty much every month for a year.
2) How soon did symptoms present?
I'm not sure exactly. Within that year I had developed paps. After diagnosis I was put on doxy for a sinus infection and 2 days in I thought I was having an allergic reaction but in retrospect it was probably a IIH flare up. The one that did me in was a course of Levaquin 500 mg/10 days symptoms started around day 6 and got really bad.
3) What are your main symptoms?
extreme facial pressure, behind the eye pain especially when my eyes were closed. dizziness, vertigo, some very brief flashes of lights, and the pulsating in the ears (also sometimes it feels like my ears are bleeding)
4) What treatment are you on?
Diamox 250mg/2x a day
5) How long did it take to get relief and have you been able to maintain the relief?
It was almost 4 months at 1000mg/day. I am a million times better but still not back to normal or like I was before that last dose of Levaquin. I do have bad days a few times a month but a lot of days I am ok.
6) Did you ever manage remission?
Not yet!
7) Is there anything special that you do that you think helps you manage the symptoms?
Staying active (walking 5-6 miles a night) even when the pain is really bad, drinking 4-5 liters of water/day, getting enough sleep that is a hard one but less than 6 hrs/night and I will pay the next day!.
8) Are you an "allergic" person? Penicillin? sinus problems? Yes, Yes and Yes! Allergic to just about everything! Allergies to Penicillin, Erythromycin and Keflex. I've had 3x sinus surgeries, deal with chronic sinus infections (they believe spurred by allergies) and have cysts in the frontal and maxillary sinuses!
My main symptoms 6 months ago were dimmed eyesight and when I would laugh I would black out all together.
Having been on diamox for 6 months now, my eyesight has improved dramatically. I get migraines/headaches when it rains out. Headaches are normal for me.
I get pressure feelings in my head and can hear the pulse in my ears at least once a week.
I have noticed that if I limit my salt intake, by cutting the soups and processed foods out It makes the pressure almost non-existant.
Have a lovely day
Mar