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...
As many of you know I am ALWAYS doing research, ALWAYS trying to find out what it is that has caused my IIH. Also, many of you know that my mother has MS and Sneddon Syndrome, My Aunt has RA and my daughter may have Lupus. What is causing this link? Well.....I think I may finally have found it!!!!! I'M SO EXCITED!!!!! It's called Antiphospholid Syndrome or "Hughes Syndrome". Treatment is anti-coagulant therapy normally consisting of corticosteroids....which makes sense because although I hated taking them and they made me gain weight...I felt best when I was on them. The following link has a good deal of information about the syndrome....If you read far enough down you will see the link between Hughes and IIH! I will be sharing this with my doctors and will be tested for this ASAP...along with the other members of my family. I REALLY hope this helps you too!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628175/
Much love,
MM3
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628175/
Much love,
MM3
THis is interesting...I have RA. I just had a conversation with my stroke neuro today..my headaches have been really...really bad lately...so has my RA...I have been on a high dose steroid and it is helping my HA. Last year when I was on vacation I also took high dose steroid and did not have a HA for 2 weeks, I tell the Dr. but they look at me like I am crazyand tell me the steroid..aka predisone raises ICP...I will check out the lind now and post again after reading it..nice to see you back and keep up the research...Paula
That's what I was told about steroid use also...but, it helped me tremendously. I really hope this is the key for many of us. Glad I could help! It's VERY exciting!
Khrystine
I will get back to after I rest. Cath.
Mandy
thank you for posting it, it may help someone...Paula
Speaking of steroids only. Everyone I've ever known to take steroids, no matter the reason, felt better while on them. Outside of having mood swings. My mother was on them for 4 years. What they did to her is not something I would ever want to live through. It was horrible to watch. With that said, the first year to year and a half, steroids gave her her life back. It just didn't last much longer than that.
Paula, my doctors differ from yours in that they think steroids help while you are on them, but steroid withdrawal causes a raise in ICP. It's even been the primary cause of IIH.
All and all this is kinda scary. I have often wondered how those with MS and IIH were handling treatment. I know my cousin (who has MS) gets steroid injections. Feeling like steroids are horrible in the first place, and even worse if you have IIH, I've often wondered their course of treatment.
I'm simply terrified of steroids.
I am saying that IIH is linked to diseases like RA, MS, Lupus, etc. and can be caused by a syndrome (Hughes syndrome), which causes our blood to clot easily. I am recommending that you discuss Hughe's syndrome with your doctors and find out if you indeed have it for this could be the cause of your IIH. I think it is important for each of us to find out what the cause of our IIH is...whether it be weight, Vitamin A, antibiotic use, etc. Finding out what caused your IIH is half the battle. Knowing the cause could be half the treatment.
My mother has MS, and I am very aware of what steroids can do to someone. So, I am in no way encouraging continuous use of steroids to better your health. Many of us are aware of the negative effects of steroid use, as are the medical community. I'm sorry that you may have misinterpreted my post and ask that you get back to the true meaning of my post which is that there may be something else behind our having this disease. I wish you all the best of luck in finding out what "that" is.
Much love,
MM3
I just wanted to update you and let you know that I brought this up to my doctor since my husband I are going to try to get pregnant in spring (yeah!) and are concerned about the clotting issue since I have had problems with clotting in the past and she said that she would send me to a high risk doctor before hand to be evaluated for pregnancy for this condition to do run of my bloodwork and things. So THANK YOU very much. This could save me a lot of heart ache with miscarriages and things with preganancy.
Once again you bring so much to this site - I don't know what we would do without you!
Mandy
I'm sooooo glad that you are going to begin your journey to motherhood. There is nothing more rewarding and we will be with you every step of the way. I've no doubt that you're going to be great! Glad I could help....at least a little.
Much love,
Khrystine