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Old 02-22-2016, 09:56 AM   #1
bholmes2011
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Default Pineal Cyst...

Hello everyone.
I'm hoping here I can find some support and help or similar stories. Last December I began having really bad migranes. I thought my prescription was bad in my glasses as I hadn't been to the eye doctors in YEARS. with no vision insurance I was reluctant but I went. After the normal tests the doctor sat back and asked if I had anyone with me and I said no but knew he was about to tell me something bad. He said he thought I might have glaucoma. I laughed and said that was for old people. He said the pressure in my eyes was elevated for my age (24 about to be 25) and that the cords that send messages to my brain were thin like strands and if they got too thin would snap and I could go blind. I went and saw another specialist who said I was border line. I never thought about asking at the time but in December, my eyes started to what I describe as 'flicker'. It's almost like looking through binoculars at ana object and rapidly shaking them back and forth for a split second. I don't know how else to describe it to normal people.. but it's gotten worse this year. I went back to the specialist and tried to explain what was going on and they thought I meant eye lids. When i said my vision! My eyeballs! They sent me to UVA. there i saw a world renowned specialist to be tested for everything possible under the sun... only to be told there was nothing wrong with my eyes and that it was neurological. I left crying. I wanted answers. My migranes were so bad I was throwing up and in bed almost 3 and 4 days out of the week. I went back to square one and saw a doctor. An amazing one and got an mri. They found a pineal cyst. So I went to duke and was told it was probably nothing and put on topomax to help with "chronic migranes". I have all the side effects that come with the drug and it has done nothing for my symptoms. I had another mri this week and waiting the results. I see the dr. In duke this friday. Here are my symptoms:
Migranes, eyes pressure, eyes pain - I have a had a constant base line headache for over a year. The pain NEVER ends the headache is always there. The pain never goes away no matter what I take. Migrane pain does not go away no matter what pain meds I take. Tried taking 4 different prescribed migrane meds preventative and pain killers They don't work. I see stars when I look around like someone punched me in the eyes. I have no energy. May be a coincidence but I have low vitamin d and 2000 mm for 18 weeks and levels are still in the teens -was like that before taking topomax. I now deal wi th all the side effects of topomax. I believe the eye pressure the eye doctors found and my eye pian, constant headaches ad migraines are all due to the cyst. I know brain surgery is risky but I can't live like this I have no energy and I'm always in pain. Everyday i hurt. Am I crazy to want the cyst out? I am afraid the doctor at duke will not be on my side
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Old 02-22-2016, 04:57 PM   #2
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Hello and Welcome bholmes 2011,

I'm glad you've found your way to the headache forum. I'm sorry you are dealing with pain and the often frustrating task of figuring out how to help it. It sounds like you are getting good care and at least some reassurance on your eyes.

Before considering something like surgery for the cyst you may want to consider any med options you haven't tried such as beta-blockers or nortriptyline. Some people respond well to Botox. Vit D is important for nerve health, supplementation is often needed. Low levels can contribute to pain. Also be sure you are avoiding trigger foods for migraines: aged cheese, red wine, cured meats, vinegar, citrus, chocolate, pizza, etc. Geez, all the good stuff...

Make yourself at home. There are many wonderful and supportive people here.

I hope you find relief soon,
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Old 02-23-2016, 07:26 AM   #3
bholmes2011
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Default Thank you

Thank you for your response! I can only assume the doctor at duke would want me to try more than topomax before jumping to surgery I hate taking meds. I am not one of those crazy refuse-to-take-meds health crazed people but I am concerned about what I put into my body. I was extremely concerned about taking topomax to begin with due to the side effects. Nortriptyline drugs I have not tried but are anti depressents. I do not nor have never dealt with depression and so I do not have a chemical imbalance there and do not want to cause one or potential to be one. I would like to stay clear of those drugs and their potential addiction. I took far too many risks than I wanted taking topomax and I don't think I could do that again with an antidepressant but that's just me.

I've been struggling with this for over a year and to me the eye pressure and pain and flickering/vision problems alone coupled with the headaches and migranes that cannot be touched or helped by medication point to the cyst being the cause. But I'm no doctor. I just want it out. I just wanted to let you know I tried changing my diet and avoided the foods listed above which did indeed suck btw lol really really bad. I have always eaten healthy so it was easy to replace the foods and still get nourishment, but it did not help I still eat very healthy and "clean" most all of the dinners and meals I make for our family is from scratch and alot of times we use fresh Deer and chicken meat and veggies from the market.

Hopefully I get the results from the MRI today.
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Old 02-23-2016, 11:29 AM   #4
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It sounds like you are taking good care of yourself. I figured you'd tried the dietary changes.

I do understand not wanting to take meds, though sometimes it is for the best. I have a nerve injury and neuropathic pain and was resistant to taking meds myself. I mentioned nortriptyline specifically because I spent a little over a year on it and had helpful results. The dose for pain and headaches is very small compared to antidepressant doses. 10-25mg instead 100mg. Big difference. It downregulates pain interpretation. I did best on the lowest dose at bedtime and have since been able to discontinue it. Don't be afraid to try low doses of new meds to get some relief. It is a concession for those of us who prefer to be med free and finding the right med and dose can be tricky, but getting pain controlled is so important.

I hope for the best for you on that MRI. Take care,
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Old 02-26-2016, 10:22 AM   #5
bholmes2011
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Default thank you!!

Thank you so much for your support ! I just got out of the doctors office. He suggested I come off topomax and try the antidepressants. It's 25 mm like you said and he said the side effects are minimal to none because of the low dose. He also wants to try botox. If my insurance approves he may take me off the antidepressant and just do that every 3 months or so. If either drug work we may stick to that. I again expressed my concerns about the eye pressure and pain and vision issues and how I feel that the cyst is the cause, but I understand the need to go through the steps and that surgery is a big big step and very risky.

We are on the same page which is good. The mri had no growth which is also good. I want to feel better so I will try whatever he suggests and I agree with you that it us worth a try vs. Being in pain. I just feel until this ING is out my military and civilian career is at risk. I just want to feel better and be myself and I hate that I have to be on meds to do that. thank you again for being there! I was so glad to see your post! I will let you know how the new drugs go and if tricare will approve botox.

☆☆☆live well☆☆☆
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Old 02-27-2016, 07:58 AM   #6
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You're very welcome. I am so glad you had a positive doctor's appointment. That is a good, viable plan. Surgeries don't always go as expected even when performed perfectly. Meds are a safe beginning. I hope one of the new options works for you. If you have side effects on the antidepressant you can go down and try titrating up. I got uncomfortably dizzy at 25mg Pamelor (nortriptyline) and went down, but I am little like my name says. It can take several weeks for maximum effect so hang in there.

Hoping this brings relief, take care.
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Old 03-11-2016, 06:57 AM   #7
bholmes2011
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Default Not sure what to do

So I am currently coming off topomax to transition to the antidepressants. The past few weeks my eyes have been getting worse. I explained to the doctor while at duke my concerns that my eye pain was worse but he did not address. Ever heard of muscle failure? That is the pain I experience in my eyes. I feel like they are straining. It's a burning pain almost like allergies but in the INSIDE of my eyes. It's very hard to describe. I almost want to go back to the eye doctor and get them to test and see if the pressure in my eyes is higher than it was when all this started. The only thing I can think of is... my eye pressure is still elevated that has been confirmed - to the extent they thought I had glaucoma. The optic nerve is like a strand and I'm afraid the pressure in my eyes being elevated for so long...well my eyes can only handle so much. The pain is getting worse and the length of the time the pain lasts increases everyday. I'm about to head to uva and get a second opinion. Everytime they do the pressure test though I end up in bed for the rest of the day and my eyes hurt to keep them open or closed and no amount of drugs can take the pain away so I'm not sure what to do... headaches and all other symptoms are still the same as well.

-frustrated and tired of feeling like crap.
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