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...
Hello all,
I have been stalking the site for a while and now even though my hubby is very supportive I need more. I guess I will tell you my story. Around 1999 I was diagnosed with an op of 40. The way it was explained to me , it gave me the impression that it was like i developed an infection and had to take the medicine and it would go away. I took the diamox with no side effects until I found out I was pregnant in 2001. I stopped taking the meds and didn't have any issues for 10 years(i know now it was remission).at least I thought I had no issues. Around this same time I was diagnosed with prolactinoma as well. In 08 we decided to have another baby but since I had the pituitary tumor I had to take a med so I could get my period again. By july 09 had my beautiful baby girl but did have some severe "sinus"headaches. Fast forward to summer of '11 headaches are ferocious and unresponsive to normal meds. My blood pressure starts to sky rocket and is unresponsive to the meds they try. Eventually I'm re- diagnosed and mri shows a lot of fluid that is even squishing my pituitary gland out of position. Started the diamox and it was awful. I have been sick this time but the dizziness and vision problems were getting better until...... Now I am scared of getting so I need a shunt or something. I know I am jumping ahead but I want to go back to work and live again...now ! Excuse my narcisstically long rant!
I have been stalking the site for a while and now even though my hubby is very supportive I need more. I guess I will tell you my story. Around 1999 I was diagnosed with an op of 40. The way it was explained to me , it gave me the impression that it was like i developed an infection and had to take the medicine and it would go away. I took the diamox with no side effects until I found out I was pregnant in 2001. I stopped taking the meds and didn't have any issues for 10 years(i know now it was remission).at least I thought I had no issues. Around this same time I was diagnosed with prolactinoma as well. In 08 we decided to have another baby but since I had the pituitary tumor I had to take a med so I could get my period again. By july 09 had my beautiful baby girl but did have some severe "sinus"headaches. Fast forward to summer of '11 headaches are ferocious and unresponsive to normal meds. My blood pressure starts to sky rocket and is unresponsive to the meds they try. Eventually I'm re- diagnosed and mri shows a lot of fluid that is even squishing my pituitary gland out of position. Started the diamox and it was awful. I have been sick this time but the dizziness and vision problems were getting better until...... Now I am scared of getting so I need a shunt or something. I know I am jumping ahead but I want to go back to work and live again...now ! Excuse my narcisstically long rant!
You haven't had a " narcissistic" rant!, more, you are sharing your fear , which is what we all do here. I do hope we will be able to calm you down and give you some perspective.
Your story surprises me, in a good way. How lucky for you not to have had symptoms even tho your opening pressure was so high!
But it seems you have joined the rest of us now, with dealing with pain and vision problems.
Don't panic yet. You may have to give it some time, to find the level of Diomax that suits you, and works for you.
The side effects can be dreadful. no doubt but as time passes, 6-8 weeks it does get a bit easier.
But, are you taking it since the summer? If so, well something will have to change if you are not getting relief. It could be a simple adjustment to the dosage, hopefully.
Have you had a second lp? To check your opening pressure?
Do you know how your paps are now? When did you last see a Optht? All these tests will give you a better idea of where you are.
Most of the time, they really only shunt if your eye sight is comprised. You would need a full work up with the Opht to decide this. It could still be a long way off.
I have the same trouble as you with uncontrollable high blood pressure. The pain is responsible for a lot of it. I take a small blood pressure tablet daily but work at keeping my pain level down as well.
Thankfully, you don't have to suffer the dizziness, your dr can prescribe some thing for you.
Will your dr allow you pain meds? I hope so!
I am so sorry that you are experiencing symptoms now. It can make a normal life difficult. But, a lot of us here, have changed our worlds, and some for the better.
Its just , different.
Even tho I have a lot of problems I still love life, and in some ways, I think I have a better life now.
I hope you will let us help you and advise. We have all been thru it and have picked up some stuff along the way.
As we say to all new people joining us, Welcome to our IIH family! Cath
Kay
What everyone is saying is true, lots of people are successfully treated. It's just that they don't usually hang out in support forums because they don't need to! There are lots of successful shunts, people whose side effects on diamox or topamax have gone away, or people who magically get better all on their own. Everyone is different, and everyone has their own healing path.
In the meantime, please vent, yell, scream, whatever in here. We all do it from time to time, and we're here to help.
Another great thing about this site is the sharing of information - treatments, symptoms, medications, right down to how doctors are treating people and how to know if you have a good doctor or not.
Take heart. Things will eventually get better for you.
You will see the people on here are so compassionate and will answers all of the questions you might have. I have only been on this site for about 3 weeks and the people are so nice!
I too have a prolactinoma, a small one only 2mm and since my last blood work it was significantly coming down so hopefully all goes well next appt. I find it weird and I somehow think the two are connected but my endo doctor and my NO doctor argue and say these two things arent related to IIH...though my endo doctor says PCOS is related to IIH....not sure how true but it's good info to have.
Again, I am so glad you found this site. I hope you come to us with questions and worries that we can help you with. I am glad you are already blessed with two healthy children.
I'm sorry that all of us have this terrible "diease" but together we can be better...and share advice.
It's important to not lose hope, and as many say side effects lessen within a couple weeks.
I've been fairly lucky and haven't experienced any yet...but I'm preparing myself that I will.
Stay strong and don't loose faith,
Christa
You did, right? If not this needs to be your first step.
Even tiny tumors can cause this much trouble. Visual symptoms and headache are the #1 red flag proving tumor is not an incidental finding and requires intervention. Pituitary tumors do cause your symptoms.
Come on! You have a pituitary tumor, empty sella and they want to put in a shunt? Cart before the horse OMG!
Dealing with it is a no brainer. See a pituitary specialist, get rid of it and be on with your life!