Headaches -- getting worse, meds won't help

[Alesis]

Hello everyone:

I joined this site in 2009 and do not recall if I posted here before or not...anyway, nice to meet you all and thank you in advance for your insight.

Although I have been getting left-sided headaches on and off since 2005, they have come back full force in the past week or so. Per the advice of someone on another site, I am now keeping an online headache journal. Concurrently, I am suffering from nausea, decreased appetite, slight hearing issues (it feels like my left ear is plugged), clumsiness (dropped two large soda pops in a 24-hour period, constantly lose my balance/bump my elbow, etc.), visual disturbances (I saw "stars" when I used the restroom today; normally this happens on occasion and only when straining/I did not strain at all when I went), confusion/trouble concentrating, some lightheadedness, and an exacerbation of my bipolar disorder. The latter has gotten a lot better since my psychiatrist added clozenapram (sp?) last Thursday.

Some history: In 2009/2010, I saw a neuro. I had some type of brain scan (I forget which type) and it came up negative for tumors and chiari malformation. Spinal tap was done and pressure was normal. Saw an eye specialist and no papilledema. Neuro prescribed abortives and they did not work, just made me feel weird. She also tried a preventative and it gave me nightmares. She said I did not fit the pattern of migraines anyway. I stopped seeing the neuro group sometime in 2010 when my symptoms got better on their own.

Since this all started again, I starting taking 400 MG ibuprofen after the pain kicked in. It helped at first (although I am now wondering if it was coincidental and they went away on their own as the day went on). The headaches got worse over the past couple days and I took the same dose in the morning and at night. Now, I still get the headaches, despite having taken the medication. I am really starting to wonder if the medication is working.

The headaches occur in the morning (usually set in not long after I wake up), when I lie down (regardless of time) and when I go from lying down to sitting up.

Should I call the doctor?

My psychiatrist said to call my primary care if my psych symptoms got better and the rest of my symptoms did not. (I live in another state now and would need to call her before seeing a neuro). Normally my psych conditions are well-managed, and they are getting back under control again. She said to give it two weeks, and it has only been three days (tomorrow it will be four). However, I am bouncing back pretty quickly with the mental symptoms, just not everything else.

Since I had testing done in 2009, I am curious if I will get tested again. (I wonder how much in the head can change in three years?) I am willing to do what it takes, as I just want to get to the root of the problem and make the headaches go away!

I've been to physical therapy, rheumatologists and a chiropractor. None of the above helped.

I hope someone can point me in the right direction!

Thanks in advance,

A.

[Porkette]

Hi A,

I had wicked migraine headaches before I got epilepsy. My advice to you is to have your family Dr. refer you to see an Epileptologist at an Epilepsy Center. This Dr. can run tests on you to see if maybe you have a problem with spinal fluid causing
you to get dizzy, lose balance, and cause your ears to be plugged up. You can also see a neurophysciatrist while you are there the Drs. work together as a team along with a neurosurgeon to find out what the problem is.
Cut back on the sweets and starch foods and start taking vitamin B12 1000 mcg. once a day this will help calm your nerves down. Also start keeping track of each time you get these headaches write down what time they start and stop on a
calendar, and make sure you write down if there's a low pressure in the weather because often that will trigger the headaches. If I may ask have you ever felt confused or lost track of time for a couple of minutes? The reason why I'm asking is
this is what happens to me when I have a seizure and then I get a headache after the seizure has happened. I don't mean to scare you I'm just asking out of concern. I wish you the best of luck and May God Bless You!

Sue

[Alesis]

Hi there!

Thank you for your insightful post. To answer your question, yes, I have lost track of time and felt confused, many many times. In fact, I got lost on the way to my skin doctor appt this morning, even though I knew the way there! I totally spaced out and drove down the street and realized my mistake when I was too far down. I corrected my mistake and got to my appt on time, thank goodness. However, I find it odd, considering that I have driven the same route numerous times...hmmm...

As far as the headaches go, I made an appt. with my primary care provider (that is how it works with my insurance). They got me right in, bright and early this morning. I told her about all my symptoms. She looked in both ears and they looked fine, despite my left ear feeling plugged and my having a slight challenge hearing at times. She did some neurological exams on me and ordered some blood work.

She referred me to a neurologist -- my appt is in a month! In the meantime, I signed a release of information to request all the records from my previous neuro (the one from 1000 miles away). As the lab results and records come in, we'll see what happens.

The doctor (actually nurse practitioner/my primary care was not in) said something about not making me repeat everything. I would not be too happy if I had to repeat the spinal tap. LOL I'm curious what tests the new neuro will order, though, as a comparison.

If he suspects epilepsy, I will request a referral to a specialist in that condition. I will see what the neuro says.

Thanks again,

A.

[Porkette]

Hi A,

I wish you the best of luck when you see the Dr. if you see a neurologist or Epileptologist they will probably want to do a CT scan, MRI, E.E.G., and possilby a PET or SPECT scan on you to find out what's going on in your head and if there's any
problems of seizures. I hope I'm wrong but I'm wondering if you are having absence (petit mal) seizures. I've had this type of seizure for 40 yrs. and I will be fine then I just blank out for about 30 seconds and I don't remember anything that happened
then I'm a little confused and sleepy along with a headache that will sometimes last for about 2 hrs.

It's up to you but you might want to think about posting your info. down on the epilepsy page because I know many people will be able to help you out since they have had the same symptoms you have mentioned. I wish you only the best
of luck and may God Bless You!

Sue

[Alesis]

Hi Sue:

Thank you for your help. Medical records called me and asked for the physical (mailing) address of the neurologist in upstate NY that I was at in 2009/10. My appt is on 10 Dec with the Neurologist here in IL. I am hoping they can electronically send the records, as opposed to mailing copies, because I am considering asking to have my appt moved up if the problem gets worse.

Oddly enough, yesterday my headaches weren't too bad...they crept in when I lied down in the evening...I took acetamenophen (sp?) and it did not help. I was taking an NSAID before and that did not help. The headaches seem to have a mind of their own. Last night, they crept in when I went from lying down to sitting and vice versa...they also were triggered by changes in body position. Appetite is still low...I only had two meals yesterday.

I still have troubles balancing myself when I stand up and bump my elbows/hands constantly. Still drop things...annoying! My brain is certainly foggy and I do get periods where I "space out", and stop/think what I am doing. If it's not considered a cross-post, then I will start a thread on the epilepsy board of this site.

Thanks again,

A.

[Alesis]

This morning, just as I woke up, I got slammed with another headache!

Wednesday and yesterday, the headaches only came on minimally. I got a little bit of it when I lied down at night, and turned a certain way, but not enough to be bothersome.

After nearly a week of healing from the panic/restlessness, I got hit with panicky feelings around lunchtime yesterday. I did not eat and had no appetite. I am going to try and cut down on coffee. I had a few chunks of fruit out of a fruit cup later in the day; that's it.

I was not feeling myself either. For example, I had my keys around my neck long after I got out of the car. I did not know if I had re-put them on or if I forgot to take them off. I'm still bumping into things, bumping my elbow and hands, and losing my balance, especially when walking and getting up from a sitting or lying down position.

When I got home, I ate dinner. I had two meals yesterday, that's it. I took my added psych med early as well as my other pills and lied down. I must have been asleep by 7PM.

Today is a different story. I woke up a little before 5AM and they came back to haunt me as soon as I woke up. The nausea is starting to kick in now. Nice. :(

[Porkette]

Hi Alesis,

I'm sorry to hear that you woke up with a headache today, I hope you are feeling better. I can't help but wonder if stress is causing all of this because stress fires up the neurons in the brain and in turn can cause headaches
and for me it causes seizures. What is the weather like today when you got the headache, low pressures in the weather can trigger headaches also so keep track if there's a low pressure coming in your area.
If you are loosing your balance that's all part of the nervous system and the cerebellum which is part of the brain that controls your balance. Check with your pharmacist to see if any perscriptions you are taking can cause
you to lose your balance. I know I have poor balance but it's do to my epilepsy. If you still have a headache put a cold washcloth of your face and neck a few times in the day and evening to calm the neurons down. When
you see your Dr. be sure to explain all of this to the Dr. and write it down on a calendar as I mentioned before. I wish you the best of luck and May God Bless You!

Sue

[Alesis]

Hi Sue:

Thank you for the suggestions. I have been keeping an online symptom journal (calendar-based), and copying it into a notebook for the doctor to see.

Yesterday, when I got the headache, it was sunny and quite cool.

I saw the eye doctor today and he did not feel that my eyes were the source of the problem. I am at least glad that was ruled out. Also, my bloodwork results came in the mail yesterday -- all "normal."

Oddly enough, I transposed two of the letters on the eye chart and when asked by the doctor to read from left to right, I not only needed a moment to comprehend, I had no idea I transposed the letters. These brain freezes are getting more frequent and I am getting scared. It's like what happened at work the other day -- I had my keys around my neck for two hours after lunch and did not know how they got there -- either I left then on and didn't notice, or I put them on and had no memory of it.

I called the pharmacist about the medications a few minutes ago, and he didn't think they were the source of my clumsiness/loss of balance. Thank you for the suggestion. One possible cause has been eliminated.

I will try the cool washcloth suggestion the next time I get a headache. Thank you again.

A.

[Porkette]

Hi Alesis,
I'm sorry to hear that you had another headache, I'm wondering if any of this has to do with hormones changing I know that before I went through my change I would have seizures every month do to hormones changing and this could
be what's possibly triggering the headaches as well as forgetfulness.

I don't mean to scare you but if you are becoming forgetful for a few seconds it could be an absence seizure also known as petit mal seizures. I have had this kind of seizure for 40 yrs. I will continue to work, cook, clean, talk to others I just
don't remember anything that happened when I had the seizure and the seizure last for about 30 seconds at the most. I also have complex partial seizures where I start to see colors in my eyes and I get a nervous feeling in my stomach then
I blank out but I will continue working just like normal the only thing that's different is sometimes I will walk around and when the seizure is over with I will find myself in a different location from when the seizure first started. If you are noticing
anything similar to this you may be having seizures . I'm not trying to scare you many people have epilepsy 1 out of 26 people will have a seizure in their life and each yr. over 150,000 people get epilepsy. There are many famous people who have
epilepsy like Elton John for one.
I will be praying for you and I wish you the best of luck. Be sure to let your Dr. know all that you've told me and May God Bless You!

Sue

[Alesis]

Hi Sue:

Thank you again for your kind advice and blessings. As far as hormones go, it's funny you mention that. I had a hysterectomy in July of this year, leaving one ovary so that I supposedly continue stay balanced in that regard. I am 35 years of age and had regular, albeit heavy, painful cycles up until the hyster. The 5.5 cm, benign mass, combined with the aforementioned issues caused the need for the surgery. Yes, I have learned by posting on a message board specifically dealing with that type of surgery that hormones can get somewhat out of whack, even if one ovary is left in. However, I do recall my doctor telling me that she left it in purposely so that I would keep my hormones.

I had more "blank-outs" today and made stupid mistakes at work, like forgetting important steps in routine processes. Today I made some mistakes I NEVER made. Thankfully, they were fixable.

I find myself stopping mid-task and forgetting what I am doing and having to re-group. It happens 20, 30 times daily. Other times, I don't realize the mistake until after it happens. Because of that and some other questions, I am going to post a thread on the Epilepsy board. Dang, I wonder if I've had this all my life and it got missed somehow? I've been doing this space-out thing for as long as I can remember...one of my former bosses had the gall to complain about it on a progress report in 2003...the making mistakes and not knowing it...I think that's a more recent thing for me.

I woke up with a headache at 2 AM and went back to sleep...don't remember if it was today or yesterday...today I had some in the afternoon, after changing positions (sitting to standing, standing to lying down, etc.)...

Oh, and yesterday I had trouble hearing out of my plugged ear (the one the doctor looked into and said looked normal)...I got my hair done and could not understand something the hairdresser said on that side, from a few feet away...I could hear it but not make out what she said. My husband was right here and heard her just fine.

Off to the Epilepsy board...I wonder if seizures and headaches are related?

A.

[Porkette]

Hi Alesis,
I'm sorry to hear that you had a headache and ear ache I can't help but wonder if the problem with your ear plugging up may be a cause for your headaches. I had this problem after I had brain surgery and my I had to see an ear specialist who
used a strong pressure force water gun to get wax that was deep in my ear canal that I never noticed. My ear canal got really narrow after having brain surgery and I had a hard time cleaning my right ear without it getting plugged up.
I sure hope I'm wrong but it sounds like you may be having absence (petit mal) seizures especially seeing that it happens 20-30 times a day. The only other thing that I can think of other than epilepsy is demetia. If alzheimers runs in your family
this could also be what's happening to you, but I sure hope I'm wrong. Yes, headaches and seizures are related I started having migraine headaches and then the following yr.I started having seizures.
I want you to start a gluten free diet and see if that helps you at all. Stay away from anything with nutra sweet (aspartame), MSG, and cut back on the carbs, starch foods and caffeine and let me know if this helps you at all. I wish you
the best of luck and May God Bless You!
Sue

[Earth Mother 2 Angels]

((((((Alesis))))))

Please see my response to you on the Epilepsy forum.

Additionally, after reading that you aren't eating properly, I think you should factor that into your current symptoms. Lack of nutrition, malnutrition, lack of vitamins and minerals, all contribute to headaches, memory loss, and perhaps some of your other symptoms. I think the Topamax is suppressing your appetite, as it is used for weight loss for some patients (although I disagree with that use of the drug). With the lack of food in your system, the Topamax may also be building up in your system, causing you to have a toxic level.

You are likely not receiving an adequate intake of important nutrients like potassium and sodium, as well as a sufficient amount of calories and protein. Your body and your brain need food!

A simple blood draw would reveal your levels of these things and indicate any deficiencies.

Are you well hydrated? Do you consume enough water throughout the day?

Perhaps you could try eating smaller portions more frequently throughout the day/evening to help you increase your consumption. Or perhaps you could supplement with something like Ensure or Resource, or make your own protein/veggie smoothies.

Ya need to eat girlfriend! Mama Sez ... ya need to eat!

I guarantee that you'll feel better with proper nutrition. You are weak and woozy, partially, because you aren't eating properly. That may not be the entire explanation, but I will bet dollars to donuts that it's part of it. Been through this with both of my boys.

Focus a bit more on your nutrition and water intake, and see if that helps you.

Love & Light,

Rose

[Alesis]

Hello everyone:

Thank you for taking the time to help! :-)

I called the neurologist's office and the best they could do is put me on the cancellation list. Please pray that they call me with an appointment sooner rather than later.

My last blood draw showed normal levels of all nutrients as well as thyroid, CBC, sugar, etc. I am supplementing several vitamins and minerals due to my body having used up its reserves after the July hysterectomy (kept one ovary). I have come a long way since then. Smoothies -- yes! There is a great little shop here in town that sells 100% natural, all fresh smoothies; I have them add antioxidants and they come with protein supplements mixed into them. No sugar or MSG added; they are very health-oriented and the smoothies taste wonderful. I had one today, in fact. :)

In reference to the gluten free diet -- what is your reasoning behind that? Just curious. I was tested for celiac disease and it came up negative, in case you wondering. In fact, I had a whole allergy panel done and everything except one very specific mold came up negative. As far as diet goes, I don't consume aspartame, saccharine, Splenda (I forget the generic term), MSG, or much in the way of fatty or sugary foods. I mainly drink milk, smoothies, coffee (I have been cutting down) and some Sierra Mist Natural or Sprite, depending on what's available. The soda pop is not good and I should cut it out; I don't consume that much of it anyways.

Lately, I have been eating Subway sandwiches with oven roasted chicken breast, on a toasted flatbread and load them up with veggies. For dressing, I keep it simple -- oil and vinegar. I'll eat part of it and take the rest home for later. Since I had gastric bypass in 2011, I can only eat a little bit at a time. I was hooked on Panera Bread for the longest time and enjoyed their all-natural chicken soups. I tend to get hooked on one thing and eat it every day until I get sick of it. That's just me -- once I get hooked, it's hard to break free. At least I get hooked on healthy things. My appetite since I got the headaches has dropped, however some days are better than others. I find I really need to eat what tastes good to me to break through the nausea.

I answered this in the other post and I will post it here for the sake of continuity: When I called the pharmacist to ask him if my medicines were causing my symptoms, he said that, because I have been on them so long (several years) that the potential side effects would not be showing up now, nor be the cause of my problems. I remember specifically talking about the Topamax and he said even that pill, because I have been on it for so many years, is not likely to be the cause of my symptoms, however he added in that "the body can do strange things."

As far as my ear goes, I wonder why the doctor could not see what was plugging it? Usually when my ears are plugged with wax or whatever, the doctor can look in and see it, and then treat it by using one of those high-pressure tools like you said. If it's large enough to affect my hearing (which it is) and to be felt, then why can it not be seen? Then again, it could be a sinus thing...perhaps I should see an ENT? I did have a 4.5 or 5.5 cm, benign tumour removed from the parotid (large salivary) gland, along with the gland itself back in '08...had a follow up CT scan in '09...ENT who did the surgery assured me that he got it all and that the surgery had nothing to do with my pain...now I wonder if I will get another scan (ordered by the neuro) because of the new symptoms...whatever it takes...I'm game. :-)

[Earth Mother 2 Angels]

((((((Alesis))))))

Good for you for eating healthy foods! You will see that I heartily support that in my reply to your other post.

Was the tumor on the same side as your plugged ear?

"The body can do strange things." It sure can.

Hope you get some answers.

Love & Light,

Rose

[Alesis]

(((((((Earth Mother 2 Angels)))))))

Yes, the tumor was on the same side as the plugged ear and the headaches.

Thank you again for your help and insight. I tend to be highly analytical, trying to figure things out like I am solving a mystery. I read your other post and will hop over there to re-read it and reply shortly.

Love and light to you, too. Have a blessed Thanksgiving tomorrow if it is indeed something you celebrate. :-) If not, then simply blessed be.

A.