Wednesday, September 23, 2009 dragonlady asks

Q: I have a pituitary tumor, cyst in my sinus, and a 13mm mass in my nasopharyngeal area. Help please.

I am 32 years old and have been suffering headaches and migraines since I was about 4 yrs old. I literally have some form of headache or migraine about 90 percent of the time!

Finally about 6 yrs ago I went to see a neurologist because they were getting worse. She put me on Imitrex and Inderal and although it helped, it really didn't help alot. Especially, when I am not a person who likes taking medications. Don't get me wrong, if I ever found a medication that could give noticeable relief, I wouldn't have a problem taking it.

My migraines and headaches are that bad!!!! It is just that there hasn't been any medications over the years that give noticeable results, at least compared to the side effects of the drugs. Anyways, about 2 yrs ago they started getting intensely worse again, so my neurologist ordered another MRI. They found a 4mm tumor on my pituitary gland. They also found a cyst in my left maxillary sinus and also a 13 mm mass in my nasopharyngeal area. Because the tumor hasn't grown very much in the last yr, they are not going to do anything except keep an eye on it for now.

However, no one (not the neurologist or endocrinologist) seem concerned about the cyst in my maxillary sinus and mass in the nasopharyngeal area. They say that as long as I am not having issues breathing it would just basically cause me to snore. My concern is the fact that my migraines and headaches keep getting worse every year and I personally feel that that is a lot of pressure to be going on in one area and that is probably a lot of what is wrong.

Don't get me wrong, I am sure all of those things by themselves probably aren't anything to worry about, but I think combined together it is a huge reason of why my headaches and migraines keep getting worse. So, I would really appreciate hearing from an expert or someone else out there who has gone through the same thing to give me advice.

None of the other doctors have referred me to an ear, nose, and throat specialist, but I am wondering if I should. I have a co-worker who gets bad headaches all of the time and come to find out they found a cyst in her sinuses also and after the doctor gave her medication to shrink the cyst, she still gets headaches but not nearly as bad. I am not trying to be paranoid or a hypochondriac, I would just be the happiest person in the world if I could find someone to help me with these horrible headaches and migraines!!!!! Any advice would be very much appreciated!!!! Thank you for your time.

Answers (4)

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Nancy Harris Bonk

9/25/09 1:18pm

Hi dragonlady,

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. Neurologists, who are fine doctors, treat so many different conditions, like MS, stroke and epilepsy. This may make it hard for them to be experts in one area. A Migraine specialist treats one disorder - ours- Migraine disease and headaches. 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.

Even with your pituitary tumor, it may be time to see a Migraine specialist, because it is possible to have more than Migraine and/or headache disorder. When our bodies are under any type of additional 'stress' like a virus or tumor or other "conditions" these things may make us more susceptible to our triggers. Migraine triggers may include changes in weather, too much sleep or too little sleep, certain foods and getting dehyrated to name a few. Keeping a Migraine diary is a great way to find out what triggers you may have. You can read more about this and download a free diary workbook in our article Your Migraine and Headache Diary.

A specialist can help develop a treatment plan a give you an accurate diagnosis. Ok - enough on that

I know how easy it is to feel as if you've tried lots of things out there, but there are so many medications that can be used for Migraine and headache prevention that it's literally impossible. You can find a list of potential Migraine and headache preventives in Migraine preventive medications - too many options to give up!

I hope this helps, let me know if you need more information,

Nancy

dragonlady

10/ 8/09 6:01am

Dear Nancy,

Thank you for responding. I have done a migraine diary and I don't have any food or drink triggers that I know of. Stress is a trigger, though. If I get stressed or angry my headache gets worse instantly. If I get a lot less sleep than my body is used to getting, at that moment in my life, that can also make my headaches and migraines worse. Also, sometimes the week before my period. Other than that, they have just been getting progressively worse for the last 1 1/2 to 2 years. I really, honestly feel that it is because of the tumor and the cyst and mass in my maxillary sinus and nasopharyngeal area.

I can't imagine how awful it is going to be over the next years of my life if my headaches and migraines get progressively worse as these things grow!!!!

Anyways, thank you for your help. I appreciate you taking time to respond.

cking

10/ 1/09 12:32pm

Dear Dragonlady:

I am so sorry that your headaches are so painful and are getting worse with time. Mine were that way also. It took years for me to get a proper diagnosis. I totally agree with Nancy that your best bet is to see a very good migraine Specialist. You can find one in your area via a listing of specialists on this website; if there is not a specialist close to you, it may be worth travelling to consult with one. Many of us have travelled to see a good specialist.

When you visit the specialist, in order to expedite a diagnosis and treatment plan, it would help to know your triggers and patterns. Does your headaches happen at the same time of day or same time each month? Where is the pain specifically and how would you describe it? Do you have aura? What triggers your migraines(foods, hormones, travel, heat, light, etc). There are guidelines/forms posts on this website that allow you to track patterns and triggers.

Two years ago I felt as you did, that nothing really helped (and I had tried about 30 meds and combination of meds). Now that I am on better preventatives for hormonal migraines and for hypnic headaches (inflammatory headaches caused by a brain-wave pattern in sleep), my life is so much better. I still have headaches 12 days per month, but when I do, they usually respond to Maxalt or Frova whereas they did not before being on more effective preventative medications.

I hope you find good help and that your quality of life improves. I too have maxillary cysts; I have several other health conditions related to pituitary/hypothalamic malfunction, but do not have a tumor. I do not know how much these contribute to my headaches, but if they do, my current therapies at least make me functional much more of the time than I used to be. Fewer trips to the ER. I hope you find good help.

dragonlady

10/ 8/09 6:14am

Dear cking,

Thank you for responding to my post. The only triggers that I know of are stress/anger, major lack of sleep, and sometimes the week before my period. Other than that, I don't know of any food or drink triggers. I pretty much go to sleep with a headache and/or migraine and wake up with one. I pretty much have some form of headache and/or migraine 95% of the time. It really sucks. Hopefully, someday, they'll be able to help.

Well, thank you for your help. My neurologist I believe is a migraine specialist (at least she has had me do the diary and seems knowledgeable), although I hadn't heard of hypnic headaches. Well, again, thank you for your help.

cking

10/ 8/09 8:02pm

Hi Dragonlady:

I am glad you are seeing a specialist and hope that together you are able to find something (a combo of meds, perhaps) that will help reduce the frequency AND severity of your migraines. The timing of your letter was perfect. I just spent last night and thisAM in the ER with a whopper of a combo headache. Two liters of fluid later, I still have major blood anomalies and have to follow up with my regular MD in two days. I hope and pray that I outgrow them after menopause (I am 52, but hoping menopause is somewhere around the corner). I hope you find relief soon.

Shelley

1/ 6/11 5:53pm

My husband also has a pituitary cyst and has had headaches for as long as he can remember, too. But his triggers are hot air. It's so bad that we can't have the heat on in the car and now he's getting them even when we have the forced air heat on in the house. Since we don't live in the CAribbean, this is a BIG problem for the rest of the family! Any car ride we take is done without the heat on. We live in the Seattle area, so it's not too bad, but I'm from Toronto, Canada and would love to move home again. However, the winter I spent there with my husband (he's from Dublin, Ireland), it was horrible. We drove five hours from Montreal to Toronto with NO HEAT on in the car and it was -20C out!! He has been to half a dozen ENT specialists, a migraine doctor, etc. and nothing. I am sure if he had the cyst removed or had the operation to clear out his nasal passages (one of his is blocked) that he would not suffer anymore. It's ridiculous as everything I've read says that pituitary gland cysts cause sinus headaches yet when he mentions this to the doctor, they just discount it. There must be something that can be done!! He's getting worse and his pituitary cyst is growing, so I think that can't be a coincidence. Sometimes Sinutab works, but not much anymore now that it's worse... Anyway, I wish you luck - keep pushing. I'd see an ENT before you see another Migraine specialist, because if you're not responding to migraine medicines (my husband doesn't either), then it's not likely a migraine...

jerry turnbo

6/18/11 7:25pm

I have had the same thing .My doctors told me that i would be alright .They also told me that they would just keep an eye on my condition by having a mri every six months or a year or maybe every two or three years .I am at the mercy of GOD and the doctors.The first being the better.I think GOD is a healing GOD i also think that thru him the doctors do their best work.Maybe you can try a lot of prayer by yourself and friends and family God bless you and yours.

Q: I have a pituitary tumor, cyst in my sinus, and a 13mm mass in my nasopharyngeal area. Help please.

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