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 been doing really well over the past couple of months. I was diagnosed in June and started on Diamox. The first couple of months were hell between the IIH symptoms, the side effects from the meds, and my depression and anxiety over being diagnosed with a chronic, rare disease. But, finally I saw the light at the end of the tunnel. The diamox haze lifted, my energy returned, and in August my doctor said my paps were gone! Woohoo! I really felt like maybe I was going to be one of the lucky ones that goes into remission.
Well, over the past 2 weeks, symptoms are creeping back. I never totally got rid of the whooshing, but now it's here with a vengence and it's accompanied by the underwater feeling that others describe. I don't suffer from headaches, but lately I've been having these stabbing pains in my head above my ear. They don't last very long, but they really hurt. My neck is popping, crunching and sore again. And, I'm starting to notice some visual distortions again. I'm exhausted and my brain feels "foggy".
I go back to my neurologist next Friday and I'm going to make an appointment with my optho to see if the swelling is coming back.
I'm depressed.
I'm depressed because I really thought I was getting my life back and that I was on my way to remission. I had a positive outlook and was really proud of myself for getting through this and being strong even though I have problems with anxiety and a huge phobia of medication.
I'm scared.
I'm scared that the paps are back. I'm scared that the diamox has stopped working for me. I'm scared that I will have to take more diamox and that it will do something to my heart or blood pressure or kidneys (remember my phobia). But, I'm more scared that the meds won't work for me and that I'll have to get a shunt.
Getting ahead of myself I know. But, I needed to vent. And, I know I can count on you guys for some support.
Jenna
Well, over the past 2 weeks, symptoms are creeping back. I never totally got rid of the whooshing, but now it's here with a vengence and it's accompanied by the underwater feeling that others describe. I don't suffer from headaches, but lately I've been having these stabbing pains in my head above my ear. They don't last very long, but they really hurt. My neck is popping, crunching and sore again. And, I'm starting to notice some visual distortions again. I'm exhausted and my brain feels "foggy".
I go back to my neurologist next Friday and I'm going to make an appointment with my optho to see if the swelling is coming back.
I'm depressed.
I'm depressed because I really thought I was getting my life back and that I was on my way to remission. I had a positive outlook and was really proud of myself for getting through this and being strong even though I have problems with anxiety and a huge phobia of medication.
I'm scared.
I'm scared that the paps are back. I'm scared that the diamox has stopped working for me. I'm scared that I will have to take more diamox and that it will do something to my heart or blood pressure or kidneys (remember my phobia). But, I'm more scared that the meds won't work for me and that I'll have to get a shunt.
Getting ahead of myself I know. But, I needed to vent. And, I know I can count on you guys for some support.
Jenna
Like you i have anxiety and always am scared bout things that haven't happened. My family jokes that they dont have to worry cause that is my job. So, I'll do your worrying for you. You just take care of yourself and breathe and pray. I'll take care of your worrying. The more you worry, the more stress you will have the higher you pressure will get. So let me worry for you. I'll add you to my worry list and also my prayer list.
I was able to get an appt to see the optho tomorow morning. So, we'll see what happens.
I struggle with what you are feeling constantly. I just got through pouting last week because my symptoms are returning. I do feel that I'm doing some things different to cut down on the depression, so to speak. I've really concentrated on eating healthier and just moving a little more. I can't call it excersise yet, but the phyisical therapy feels good. I guess what I'm saying is try and refocus your worry into something more healthy. It is so hard, I know that for a fact. Maybe this will work itself out. Maybe the doctors will tweak your meds to get you back going again. The ups and downs of this disease are crazy. Take care Jenna.
It serves us well even tho it is an unpleasant sensation. It will keep you on your toes , for ex, when you see your neuro on Fri. Learn not to be afraid of this feeling, rein it in and make it work for you.
I do understand the shattering fear that something is not right. And , I hate to say, but you are probably right. No one knows better than we do. But , you can turn this in to a a positive.
You are aware that something is not right and can tell your neuro, before anything comes of it. Call it a preemptive strike for you!
Get there before any harm comes to you.
I would think, they might just up the Diomax for you. Dont fret. You have done magnificently so far! Give yourself some credit! You have problems with meds but you have over come them, or at least become stronger than them.
You will get thru this as well. But, if you should ever feel, the bad days are much more than the good days, even alright days, talk to your dr.
We all need a little help sometimes. I take a very mild antidepressant now. My mood swigs were all over the place. It wasnt fair on my family.
I felt that life was hard enough to cope with besides coping with depression. I have never looked back.
As always, we are here for you. Vent, cry , rage. We will help you thru it.
Have courage about Fri and dont forget to let us know how you got on! Cath.
I know lps are a pain but they do give you that all important number, your opening pressure and yes, your right, 35.5 is high.
For most normal people their opening pressure will be between 11-13. Ours can go as high as 25, in a very over weight person.
They start counting at 20!
It seem alot of people have ops in the mid to high 20s. But there are some who have very high pressure all the time.
My first lp gave me an op of 49. Now I have a VP shunt but it is still high at 34.
I am so glad you found us early in your illness. It will be a great help to you, to help you understand the whole new language that belongs to IIh.
Ask any and as many questions as you need to .. We are all about education and support here.
Unfortunately, welcome to the group. Cath.
Kphillips - unfortunately welcome, you have found a wonderful place to be and people to share with!
I saw your other post and am happy that you are feeling better !