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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! =)
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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.,