Hi Concerned Mom,

 Has your son seen many doctors? Neurologists, endocrinologists, and the like? What other specialists has he seen? How long has he had it? Has it been growing? Got to keep searching til you find the right doctor to help you son.

Do you journal his symptoms by any chance? We have a Migraine diary that may be helpful in tracking your son's symptoms, triggers and what medications help if any. You can download that information here: Your Migraine and Headache Diary.

 Migraine specialist may be another avenue to explore. The deal with Migraine and headache disorders all day every day - and are experts in one area. Neurologists treat so many different conditions like MS, stroke, and epilepsy it's hard for them to be experts in one area.

If your doctor isn't able to help you, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

Good luck and let me know how it is going, ok?

Nancy 

CONCERNED MOM

2/24/10 9:27am

He has seen 2 Neuro surgeons and 3 neurologists. They want to do another MSI in 6 Months to see if it has grown any. He has been started on Medrin ( he takes 1 -2 at the onset of a really bad headache) and then Amitryptaline every night. But the medicine makes my son so sleepy and within the last week he has had 4 really bad episodes that have lasted anywhere from 20 minutes to 3-4 hours. he's still trying to have as normal of a life as possible but its hard when all he really wants to do is curl up in a ball.

 

i started a journal as soon as we realized what was happening and so far all we kbnow is that there is not a pattern to headaches. they are so random.

 

If you have any suggestions please let me know. I really appreciate all the help I can get.  

I know excacly what ur talking about and what ur son is going though I am 34 with 2 children.I have  a 9 mm Pineal cyst, I found out when i became unable funtion from awfull migrains. I could not stand any light even from a cell phone. There were many other symtoms,walking to the side ,sores with no infection , ect.. That Was Nov. 2010. Since then  I have lost my job, due to constent illness. My endrocrin system is not fuctioning properly . I do not have a thyriod any more and take thyriod replacement my levels change  to the exstreme from hardly no hormones to way to much this is still happening . I have been to many doctors and test, none will even concider that the cyst could be the cause , all the test i have taken nothing eles has been found. Know i am seeing a GI doctor , my stomuch has stoped malfunctioning ,I am not digesting my food . About every 3 days I vomit and have diahria of undigested food particals. I have though every GI test out there , there was nothing , NOTHING !  found no reason why my stumock is doing this . I think the cyst is cause a domino effect on my endrocrin system . Where can i find help!! some one at least willing to concider the posibility? I pray that some one will finally help you son and I, there are to many people suffering from these so called "dont usually cause problems cyst " ! We all need to keep tring . God Bless you and your son . I know how much pain and how bad the migrains get as well as just plan havic on the body. 

I just had a 10 x 17mm Pineal Cyst (more known as a Pineocytoma) removed. Most doctors will not do this surgery but I found one here in Charleston, SC that did. I'll be happy to share his informatiotion. Its sad that we are all told that there is nothing doctors can do about this when there is and there are some great doctors out there that will do this surgery and solve this problem. The first 2 doctors I saw told me that there was nothing they could do besides put me on medication and monitor it. One even told me my symptoms had nothing to do with the cyst. My doctor has never had a repeat case. Once removed its gone forever and your symptoms are gone as well! I am blessed to have found him and would not mind at all share his infomation! Just let me know.

Bless you,

Isa 

Gloria lynn

3/24/12 9:12pm

Yes thank for posting please give me info on This DR my daughter is 18 and stuttering so much Blur vision. Non stop pain in het head that gets Worst and worst everyday now her hand gets Ice blue and numb I need help she Is never pain Free Gloria

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Isa

10/11/12 10:33am

My doctor is in Charleston, SC. His name is Dr. Sunil Patel at MUSC (Medical University of South Carlina). I hope this helps!

Joy

10/10/12 11:07pm

I have a pineal cyst measuring 9mm x 7.5mm x 2mm.  My neurologists says it is "inconsequential"  and that I was most likely born with it.  I have the headaches 24/7 pain down the left side of neck and shoulder, fatigue, numbness, sleep problems, nausea, problems conscentrating, memory loss.  I would love to know the name of the dr that helped you as I live in Florence, SC.

Nancy Harris Bonk

10/12/12 11:34am

Hi,

 

Some people may have "inconsequential" cysts, but if you are concerned about yours, please seek out a second opinion. There is nothing wrong with seeing another doctor about this issue - maybe a neurosurgeon. Follow your gut!

Keep us posted,

Nancy