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Why are my headaches getting worse?
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Why are my headaches getting worse?

I am not new to migraines. I take Topamax. I recently moved, and I am in search of a new neurologist. Recently, just this last weekend, I have started getting the shakes. I have had balances issues off and on for the last couple of years, but never really paid them much attention. I have always had a burning sensation in my spine, and in my head. The burning will start on the right side of my head, and by the time the burning gets from the right to the left, to my eyes, I will be in a series of seizures that will range from two minutes to thirty minutes. Now, I am having problems with my words! I can't talk when I want to say something it's on the tip of my tongue, but it won't come out right. It's like I am tripping all around it. I am slurring my words even when I am not having a migraine/seizure episode. I am having dizzy spells. I am getting more and more fatigued and I can't figure out why, and no, I am not pregnant. I just need to know what my new Dr is going to put me through when I go to them. What am I going to have to look forward to? My left hand has been dead since Oct, but my last Dr couldn't figure out why either. And when I have the migraines it feels like bugs are running underneath the surface of my scalp. It's down right eerie. And this was happening before I got on the Topamax. The Topamax has actually lessened this a bit. And when I look down sometimes I get that same weird buzz feeling in my neck.
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9 Comments Post a Comment
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Avatar_dr_f_tn
Hi,

The symptoms that you have obviously suggests a nerve related condition.

Have you had some baseline cranial scans done?

Have you had an EEG before?

Has your previous doctor given you a diagnosis for your condition?

A diagnosis of migraine headaches are only given once other conditions which may present similarly have been ruled out. A referral to an ophthalmologist may be expected to rule out an underlying eye condition. You neurologist may request for a cranial scan and EEG to rule out intracranial involvement and a seizure disorder. Migraines and seizures may occur together. A 24 hour EEG may be able to help. A specialist is required since EEG results of a seizure and a migraine may not be readily differentiated from the other.

Blood tests to rule out any problems with your blood clotting factors as well as a thorough evaluation of cardiac function may also be requested.

Do you have any thyroid problems?
Any significant history of seizures, headaches or stroke in the family?
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Avatar_f_tn
Thank you for your response,

Back in December and January, I had an EEG because of my migraines and seizures, I was put on Topamax for both, I told my Dr then about the burning in my head, the feeling of bugs or like bugs running under my skull, the intense pressure, the balance issues, my left pinky and ring finger has been tingly and numb since October, it's going to my left foot now, but no one knows. I was supposed to go to a 24 hour EEG, but that got cancelled due to me moving. I was told that I needed a CT and MRI but it was never scheduled. He wanted to test me for a brain anuerysm, but that's all he said. Everyone that I see on a daily basis is telling me it's MS, but I refuse to believe that. I am starting to  have blackouts, so I think it's just the migraines. I am waiting for my medical insurance to get transfered, then I have to go see a GP then I am going to get a referel to a Nuerologist via Johns Hopkins, Oh and when I went to get my new glasses in Feb, she did want me go see an eye specialist because I am losing the ability to destiguish colors now.
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Avatar_f_tn
I cant' say for sure -- but try turning off any wireless routers, cell phones, cordless phones (especially DECT) -- this was the first step in my recovery from many of the symptoms you mentioned.  If cant' hurt to try...my condition is called electromagnetic sensitivity and test like MRI and CAT scans which are very high in radiation only make the symptoms worse.  Best of luck and feel free to write with any furhter questions.

Carol761
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Avatar_n_tn
Hi there,

Reading your problems is almost like looking in a mirror.  Almost.  I am now on 300mg Topamax daily to prevent, and am past Imitrex moved onto Maxalt to treat the Migraines.  The Topamax was increased so many times I can't tell you at which intervals.  My "story" is complicated by a previous brain injury. I had a severe brain injury from a closed head injury 21 years ago, but my "pre-existing" injuries are on the right side and the problems that have occurred around the time that my severe migraines began, about 6 months after my son was born, are on the left.

Though, after 6 years, effects have begun to cross-over.  I have had the gamut of tests and have some lesions, or white spots in my brain.  First a couple on the left, and one in the middle.  Now after about two years, several small foci are present on the right (following the cross-over symptoms-- NOT the foci preceding the symptoms).

I have actually been fighting for a diagnosis because a simple diagnosis of migraine simply does not cut it.  I have facial nueralgia, pain in every joint/nerve meeting place on my left side, no balance most of the time, thought with certain whether conditions and optimal good health it does improve.  Sometimes, I can't see due to focus issues and I can't barely hear at all. I have a hereditary nerve deafness which is for some reason terribly complicated at times, impaired far beyond normal.  I rely heavily upon reading lips and I can't do that if I can't see.  I can't tolerate light or sound both of which if suddenly "turned up" can ignite an instant flash of pain that takes over my life.  I often can't walk steadily so I am in danger of falling constantly.  The left side I have always depended on is no longer dependable.  I have lost feeling in my hands and fingertips....  The numbness you speak of, I feel like my limbs are dead and the only thing left alive is my mind, when it's not foggy and I can actually manage to get out what I want to say.  It's like cognitive therapy after my accident all over again.  And the bugs crawling under your scalp.  What an excellent description!

My body just feels totally like a foreign object.  For someone else this would be devastating, but since I was paralyzed on my right side 21 years ago and was left with a permanent loss of sensation, it has been an easier, though frustrating adjustment.

AND, I am supposed to work and be able to raise three young children on my own, so says the judge who lets my Ex get off easy.

I can't live like this anymore and it is not fair to my kids.  My neurologist says I should deal.  (After all, I am in my early 40's now and I walked from death, so why am I complaining?) I am so sick of the attitude.  But I worked damn hard to get my life back, and I didn't do it for it to only have 20 years of life left.  I would love for him to be in my body, in my life, for ONE day.  He is convinced it is not MS, but only after a negative Spinal and no new lesions (prior to the last Brain Scan).  My GP said it is definitely something neurological, which is self-evident.  But no one seems to be looking for any answers.  I think maybe the only way to get them to is to go off the Topamax, but since I have 3 kids that depend on me I need to be able to function which I could not do prior to the Topamax.  My options are limited due to insurance.

Somehow, those of us with similar symptoms have to get together and figure this out so we can get better.

I hope it helps to know that you are not alone.

Good luck, and please let me know where you are in your journey.
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Avatar_dr_f_tn
Hi,

I hope things are better now?

I suggest that you pursue your consult with the neurologist. This is obviously a neurologic problem and at this point involvement of intracranial structures have to be ruled out. It is important to rule out transient ischemic attacks and aneurysms since these need immediate intervention. You have mentioned of progressing neurologic symptoms like weakness (is this correct) and visual symptoms. Do these symptoms revert within 24 hours, or do you have them for days or weeks?

A 24 hour EEG will also help in delineating between true seizures and migraine.
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Avatar_f_tn
Hello,

Thank you for getting back to me. Sorry for the lapse in response. I had another bad episode this past week. The vision episodes come and go quickly. The migraines and seizures lasts a good 72 to 84 hours. It has to take a "course". It starts on one side, and it takes a day break, but when I think all is fine and well, it begins the same course on the other side. It all starts with burning, then the crawling sensation like bugs under my scalp, then the intense pressure right in the back of my head, square in the back of my head. Then by night fall if I last that long I will start with the seizures. The vision part is getting worse though. I have more hazy or smokey vision more than clear vision now. It's gotten to the point I can't go to the store or go shopping for pleasure for fear that I will go into a blackout, seizure or fall. It's getting old. However, no one knows what is going on. I did talk to someone on Just Answers, and they did say something about TIA's and MS. But if my EEG's keep coming back normal how are they going to figure out what is going on? Do I demand a CT scan? As a patient can I demand certain tests? I could deal with the loss of balance, but now that I am actually falling all the way to the ground, i t's scary. I am embarrassed to go out in public now. And now that I am having seizures with no warning, I am search of a service dog, because these symptoms are taking over my life.
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Avatar_m_tn
You need to help your body to build up your immune system.The breathing exercises - pranayam is a holistic approach creating extra oxygen supply in the body and will slowly help with the health problem.Do the pranayam to see the benefits.Build up your timing slowly and after two weeks at the suggested duration you will start to notice benefits.

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for upto 30 minutes twice a day.(Max 60 min/day) Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.


Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 10 times
----
Only by doing you will benefit and will feel good that you can do something to help the body.Copy and print this to master the technique.This is  simplified pranayam for everyone and you do not have to go to classes to learn. This is for life unlike short term classes where you do it in the class then stop when classes are over.  
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Avatar_f_tn
Ok, I finally got fed up and made an appointment to Johns Hopkins. The nurse I talked to wasn't happy with the symptoms, and how long I have been letting things just happen.


This is what she said:

The symptoms are more than one thing. There can't be just one test done like in the past. I have been living my whole life being told that it was all in my head, and nothing was wrong with me. Well uh, yeah it is all in my head, but there IS something wrong.

The symptoms are displaying serveral possabilites. Like said above it could be TIA's or migraines mimicing TIA's. There could be further nerve damage from my old head injury from when I was 3 months old. Feeling the crack in my skull from when I was an infant isn't as normal as I thought it was. Since I was so young it should have healed better, and my parents should have known better.

The falling and balance issues are NOT seizure and migraine oriented. Those have to be looked at. I have an appointment with the seizure and blackout specialist on June 17th, The day before my Birthday, joy.

They are going to do a 24 hour EEG, PET, CT, MRI, MRA and anything else they can think of, and they are going to look into redoing my head surgery. And they are going to test me for a brain tumor, Aneurysm, MS, Huntington's Disease (my dad has that) and to see if I am having TIA's since it's been going on for so long, if it's caused some nerve damage further then what my old head injury has done.

I did discuss the possability of this being the side effects of my Topamax, and she asked me what symptoms I was having before going on Topamax, and after I told her everything except for the falling and blackouts, she said no, it's not from the Topamax. She said if it wasn't for the fact of me falling and having episodes closer and closer together with a 5 year laps, she would have ruled out MS.

Everyone please wish me the best of luck. And thank you for all of your support. I hope I am finally going to get answers.
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Avatar_f_tn
Update:

I didn't make it to appointment without landing in the ER. I went to the ER because I couldn't stop bleeding. However, once I got to the ER, they were more concerned with the outward symptoms they were seeing.

They noticed the slurring of the words, the stuttering, the balance issues, the lack of focus, and the memory issues, and the way I just set there. They kept asking me if I drank and did drugs, and I was persistant on the fact that I did NOT drink or do drugs.

The triage nurse said, well the Dr is going to have a lot of questions for you. I said fine. I have a lot of question for him.

He did a Neuro test. The light in the eyes, the reflex test, the walking on heels, tippy toes, etc. I didn't do so well on those. He even did a CT scan.

He did a lot of blood work, All blood work came back normal. Thyroid is fine, I don't have AIDS, I don't have diabetes. Clean bill of health on that part.

CT Scan: I don't have TIA's, I don't have TMI's And I don't have a tumor or Aneurysm.

He did say that I do have something wrong with my nerves and muscles. I do need a LP done and an MRI. He said since he wasn't my regular Dr and it was an ER there were only so many tests that he could do. He could only test for life threatening issues.

He told me I had no reflexes on my left side, I had muscle waste (whatever that is). I have Optic Neutertis (spelling) And my reflexes were slow where I still had them. My pupils weren't dialating at the same rate, my eyes weren't tracking together. My left eye was almost dead.

And I had a very abnormal gait. And I couldn't follow commands no matter how hard I tried. He did say they were Neurological issues.

Just thought everyone would like to know what I found out. I do go see Johns Hopkins this coming Tuesday.
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