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 IIH at 29

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PostSubject: IIH at 29   Mon Jul 03, 2017 11:37 am

So as the above says I am 29 years of age and I have been diagnosed with IIH. What started it all was a visit to the opticians in Feb of this year who spotted that my optic discs were swollen. That was it. I was also getting the pulsatile tinnitus, but I was never told that that was a symptom so I didn’t report it or think anything of it. From there it took 4 months to diagnose IIH, or just Intercranial Hypertension. After multiple eye checkups, the dilation, the cameras and all that jazz, to an MRI, a CT Scan and various blood tests throughout, I finally got a lumbar puncture. The opening pressure was 27.8 so 28 which apparently is high, but not as high as others I’ve read in here, and I was put on a course of Diamox. Again, from reading in here and not from the Neurologist, I have seen that there doesn’t really seem to be a cure, it may disappear or it may not. 
Anyway, I have just started the Diamox, I’m on 250mg a day so 125 in the morning and 125 at night, this will increase to 125 in the morning and 250 at night and eventually go up to 250 in the morning and 250 at night. The way the doctor phrased everything and told me what little information he told me I thought that this would be a short-term thing. Take it for 6 months or so, the classic "lose weight" and then everything would be fine. Now that I have read up on it all myself I can see that that may not be the case. 
I have an appointment in August, probably a follow up to the lumbar puncture and to see what the meds are doing, so I am just wondering what kind of questions I should ask him. It appears he was very lacking in information of any type so I want to go in, armed with questions, and have my wife there listening in as well so she can understand it as well. 

Thank you in advance. Also i really hate Diamox, i'm only on it a few days but the fatigue and the shenanigans surrounding carbonated beverages are frustrating me. Though not really them specifically, just the fact that my Dr said that the notable side effects are "tingling, like pins and needles, in the hands and arms" and that was it. Nothing else. I will be raising this with him when I see him next.
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PostSubject: Re: IIH at 29   Tue Jul 04, 2017 4:03 am

you are actually on a fairly low dose compared to what I've seen, I'm surprised you are having any side effects.  I could not take more than 125 mg twice a day due to severe fatigue.  maybe you should get a second opinion, not sure if your doc knows enough about this.  one important thing to consider is that in men, obstructive sleep apnea is commonly associated with IIH.  if you ever snore, this ought to be investigated.  OSA can cause IIH.  make sure they investigate all secondary causes.  a neck MRV should be done as well as a brain MRV.
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PostSubject: Re: IIH at 29   Wed Jul 05, 2017 4:35 pm

Everyone's "normal" pressure is different, so they really should be focused on your symptoms following the spinal tap..if it's IIH, you should have gotten some temporary relief from symptoms once they drained off some spinal fluid.

They should start your Diamox low and build up the dosage. I did ok with Diamox the 1st time I took it, but couldn't tolerate it the 2nd round. Some members find the side effects get better over time, but they just continue to build with other members. I'd recommend keeping a symptom log to track it and see if Diamox is really helping your symptoms. We have a sample in Useful Guides and Printouts [You must be registered and logged in to see this link.] And, here is sample of what you need to know when taking a diuretic like Diamox [You must be registered and logged in to see this link.] Unfortuantely, we tend to know more than the physicians regarding IIH, so it's important to do your research and advocate for yourself. If you have questions regarding or concerns regarding Diamox, I would talk to your pharmacist and they'll let you know if the physician needs to be informed.

There's also a guide for talking to your physician about IIH [You must be registered and logged in to see this link.] Hopefully that will help you come up with questions for your next appointment.

I encourage you to look over the forum and let us know if you have any further questions or concerns. We'll help you through this the best we can.

Take care,
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IIH at 29

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