[.marisa]

Hello. I am new here and always looking for new information and suggestions that might help me. It is also comforting to meet people who know the struggle of dealing with such a burden. Before I was diagnosed I was always relatively healthy other than minor issues here and there along the way. One day I simply woke up and had headaches. Each day they were progressively worse. I finally saw my primary doctor who gave me something like Imitrex while I waited on referral. She also tried to get me into a neurologist. While waiting I started having more symptoms. I had eye issues, my vision was actually blanking in and out, horrible nausea, vomiting, and fatigue. I finally saw the neurologist who I was not happy with because all he wanted to do was medicate me. He did not want to find out what was actually wrong me with me. I did finally find a good neurologist who did do testing. I had blood work, eye tests, multiple lumbar punctures, and MRI&CAT scans. I was eventually diagnosed with pseudotumor cerebri. I had to have a LP shunt placed after seeing a neurosurgeon due to having severe eye issues. After that happened the neurologist diagnosed me with chronic migraines in conjunction with the original diagnosis. This he said because I continue to have chronic headaches/migraines and they can’t seem to find medication to “fix” them. The shunt has fixed the vision and continues to help but is not the fix I was hoping for. The biggest issues I have are when I do lots of activity and get my heart rate and blood pressure elevated this seems to really make things worse. This can bring on nausea, headaches, fatigue, dizziness, or lead to a full migraine if I push it too far too fast. The doctors don’t seem to have answers for this problem. Smells are also a huge trigger for me as I know they are for other people. Cigarette smoke will bring on a migraine for me faster than anything else, so I have to be very careful in public. Currently I see a neurologist and a neurosurgeon for these issues. I sometimes feel as though they really don’t know what is wrong with me because they have not been able to fix the issue. I currently take Topamax, Propranolol, and Valsartan, however, I am still having daily headaches. Any suggestions are welcome. It is nice to meet everyone. Happy New Year! =)

[Lara]

Hello marisa,

Welcome to the NeuroTalk Support Groups.

The best way to find past threads or posts regarding Pseudotumor Cerebri is to use the Forum Search Feature

You will find quite a few on the

General Health Conditions & Rare Disorders Forum

There is also the

Headache Forum for discussions about migraines and headaches.

I'm very sorry you are experiencing all those problems and I really hope that there is something else that can be done that can give you some relief.

It's good to meet you,
take care.

[Diandra]

Originally Posted by .marisa

Hello. I am new here and always looking for new information and suggestions that might help me. It is also comforting to meet people who know the struggle of dealing with such a burden. Before I was diagnosed I was always relatively healthy other than minor issues here and there along the way. One day I simply woke up and had headaches. Each day they were progressively worse. I finally saw my primary doctor who gave me something like Imitrex while I waited on referral. She also tried to get me into a neurologist. While waiting I started having more symptoms. I had eye issues, my vision was actually blanking in and out, horrible nausea, vomiting, and fatigue. I finally saw the neurologist who I was not happy with because all he wanted to do was medicate me. He did not want to find out what was actually wrong me with me. I did finally find a good neurologist who did do testing. I had blood work, eye tests, multiple lumbar punctures, and MRI&CAT scans. I was eventually diagnosed with pseudotumor cerebri. I had to have a LP shunt placed after seeing a neurosurgeon due to having severe eye issues. After that happened the neurologist diagnosed me with chronic migraines in conjunction with the original diagnosis. This he said because I continue to have chronic headaches/migraines and they can’t seem to find medication to “fix” them. The shunt has fixed the vision and continues to help but is not the fix I was hoping for. The biggest issues I have are when I do lots of activity and get my heart rate and blood pressure elevated this seems to really make things worse. This can bring on nausea, headaches, fatigue, dizziness, or lead to a full migraine if I push it too far too fast. The doctors don’t seem to have answers for this problem. Smells are also a huge trigger for me as I know they are for other people. Cigarette smoke will bring on a migraine for me faster than anything else, so I have to be very careful in public. Currently I see a neurologist and a neurosurgeon for these issues. I sometimes feel as though they really don’t know what is wrong with me because they have not been able to fix the issue. I currently take Topamax, Propranolol, and Valsartan, however, I am still having daily headaches. Any suggestions are welcome. It is nice to meet everyone. Happy New Year! =)

Hi Marisa,
Glad you found the forums.
I did not know what pseudotumor cerebri was and looked it up.
Sorry you are dealing with such a difficult issue.
It sounds so frustrating.

I had daily migraines years ago but from Lyme Disease and after antibiotic treatment, they are now rare. Thankfully.

I do however have many symptoms that have become permanent and I research solutions all the time.

Others with your medical issues will come along to help. I simply wanted to say is do what you are doing here, research, research research and ask questions.
I have been amazed at where I have found help.

Your issues sound very structural but one thing I have learned is inflammation plays a big role in many illnesses and what we can do on a daily level is have a diet that reduces inflammation. The theory is that a diet that is alkaline, vs acid will help with that.

I attended what I call holistic health centers to learn about these issues.
( this is where I went the first time but they have gotten too expensive ...talk to me if you ever entertain going, I have other suggestions)
http://hippocratesinst.org/
I have gone to two week and three week sessions where you eat a raw vegan diet, drink green veggies juices and do a lot of alternative treatments like IV vits or colon hydrotherapy, massage, meditation, etc.

I turned to these places when I was told there was no more treatment for me except pain medicine. I found these places very helpful but will admit, they are very strict diets and regimens but, they do help. I cycle doing the diet because of the extreme nature.
For example, I was very bad this holiday season eating whatever I wanted but I will get back to a healthier, more structured diet with no sugars, no simple carbs and lots of vegetable and high protein like quinoa and chia seed.

May I suggest one thing when you write on these forums?....try to make paragraphs because many of us have vision issues and posts are easier to read when separated into sections.

I wish you the best,
Diandra

p.s. Do post this same info over at the two forums Lara suggested...you will get more replies.,

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene