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...
Hi All, I was diagnosed with IIH 3 weeks ago when I was referred to eye casualty after an eye test found papilloedema. I was then seen by neurology who carried out an MRI and a lumbar puncture (opening pressure was 38) who then told me I had IIH.
However, everything that I read online seems to suggest that IIH is accompanied nearly always by headaches. I get the occasional headache, but thus far never a painful one. I can't seem to find any reference to my symptoms: aside from the papilloedema causing enlarged blind spots in my vision, my symptoms for the past few months are as if I've had a head cold that I can't get rid of. My ears constantly 'pop' as if on a flight, my sinuses and nose are blocked, and my head feels heavy. I began treatment for sinusitis shortly before my vision began to deteriorate. So my question is does anybody else get these same cold-like symptoms as opposed to a headache?
Also, I'm a 21 year old female who has been on the pill for the past ten years. I'm overweight, however the doctors said that they usually don't expect someone of my size to get IIH. I've recently lost and then put weight back on which apparently can cause IIH to arise?
Many thanks in advance for any replies. :-)
Good luck on your journey
Thanks again and hope you are and stay well. :-)
I was also diagnosed just shy of a month ago. Same situation: no severe headaches that I could ever recall. Definite constant pulsatile tinnitus, dizziness, tired eyes and lots and lots of colds/stuffy noses etc. I have been on 1000mg of Diamox for about 3 weeks. The beginning was rough, but I think my body is finally getting more used to it. My Dr has me eating a lot of potassium and taking tums three times a day for the calcium. So far so good. I have my next eye scan in another month and hopefully there will be improvement in the papiledema. Aside from loosing 15 lbs fairly quickly. I physically don’t feel any improvement in my symptoms so we shall see! Really hoping the weight loss and Diamox get me back to normal!
Best of luck to you on this journey! :)
I'm not sure that taking that much TUMS is really a good idea;
https://www.ncbi.nlm.nih.gov/pubmed/18575051
too much antacids can cause milk-alkali syndrome. diamox does not decrease blood calcium, but it does increase urinary excretion of calcium, which can cause kidney stones. my concern is that all the TUMS would increase your risk of kidney stones with Diamox. bicarbonate is one way to counter the acidosis caused by Diamox, but I don't recommend sodium bicarbonate. I tried this once and it made me sick. we are supposed to be sodium restricted with PTC for a reason. water follows salt, so the salt gets in the brain and our brains swell. this is a very difficult problem, but I don't think TUMS are the answer.
Update RE the sinus/ear fullness: I saw my doctor approx. 2 weeks ago and he was adamant that the sinus/ear pressure could not be related to the IIH and he looked at me like I was crazy!? I couldn't/can't believe that, especially not after reading some of your comments. I've therefore got an appointment next week with an ear specialist which I'm somewhat looking forward to, as either my ears are problematic in themselves or the acetazolamide has really started to affect my hearing. I'm having a big increase in tinnitus ringing and eardrum fluttering, but on the plus side, my papilledema is slowly getting better.
Hope everyone is doing well and thank you again. :-)