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 I'm a 32 yr old female who was diagnosed with PTC last month. For the past few years I was told I had cluster migraines, or migraines in general that can last up to a month. After going to an ER in Boston I was diagnosed with PTC after a spinal tap. I have seen a neuro opthamologist and a new neurologist in Boston. I am currently on 250mg of Diamox 3x a day and Lasix once a day, and also 80 mg of propranolol for migraines(although I don't know if I even have migraines?). I've had 2 spinal taps and one blood patch since I was diagnosed, but I'm still not seeing any improvement. The medication has made me extremely tired...taking a shower can be a chore! I've also had the changes in taste from Diamox, as well as tingling in hands, feet and mouth/nose.
Any information you can share would be GREATLY APPRECIATED! I was so thrilled to see this group and to hear that other people know what this headache feels like.
Thank you!
Any information you can share would be GREATLY APPRECIATED! I was so thrilled to see this group and to hear that other people know what this headache feels like.
Thank you!
Well, you have come to the right place. First, I welcome you, but I also express some sadness that you are experiencing this at all.
I was diagnosed two years ago and continue to take Diamox. For the tingly feelings, those go away, and I have been told that it means that it is working. Be sure that you are drinking plenty of water. I hydrate with coconut water in addition to bottled water because it hydrates you naturally and replaces the potassium we can lose from the medication. It's an acquired taste, but I look at it like medicine.
I know that any and all artificial sweeteners should be avoided. Especially aspartame. Aspartame has been linked to PTC. I try to avoid these sweeteners all together. You are better off with organic sugar.
Of course, weight can be an issue for some of us, as it is with me. For some, losing weight can put this into remission. Sounds good to me, so I am on a weight-loss plan to get rid of this.
I have a headache mask that looks like something Batgirl would wear. I have two so that one is always in the freezer. I find these cold compresses work really well. (I don't like to take too much medication.) Also, you will find LOTS of helpful information on here; for example, try sleeping at a 45 degree angle, using three pillows to prop you up. Lying flat can be problematic for PTC sufferers.
Read through old posts as well. They are very helpful. Don't worry, you have a good support system here. I came here because I did not know anyone who had PTC. I found a warm, welcoming place filled with intelligent women (and a few men!) who willingly share their knowledge and experience.
Good luck on this journey.
Angela
First bit of advise, is, to go back and read the older posts. Just about every topic has been covered and it will help you to understand the new language, some of the meds used and tips on who to deal with various things.
I m afraid it is possible to still suffer from migraine as well as having the IIh headache. I do, I get about 2 a month but have got better at identifying them. I have an " aura". My face goes numb.
I still have my migraine meds for every month. They some times help the IH hd! I take Imogrin, 50mgs.
I am off Diamox, know here as the devils drug! The side effects do get better to deal with or may be you just get use to them. I found any thing to do with lemon, I could still take. Lemon drinks, lemon chewing gum, great for the dry mouth that Diomax gives you.
Like Angela said, you have to keep up the fluids! Big time. try to drink as much water as you can. I put it in to one of those plastic bottles and got in to the habit of carrying it around with me every where, Again, a slice of lemon in the water helps.
You have to keep a close eye on your Potassium levels. most here eat a banana every other day or take supplements.
You need to have your bloods checked every few months, to make sure everything is going ok cause of the Diamox. It pushed me into anaemia all the time.
Feel free to ask as many questions as you like. We try to answer all of them.We are a good bunch of people and really look out for each other. So, welcome to your new IIH family. Cath