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After almost a year my neuro dosent even know what's wrong with me

lou93908

Last 2-3 years I've had a few episodes of aura without headache. So last year I had 4 separate bouts of flu like symptoms with fever. Then in December 2016 I have a horrible tension style headache. This headache has turned chronic with muscle tension in the back of the head and similar sansations in my face. I'm refered to a neuro

8 months later I've had an mri, X-ray, cortisone/epidural injections in my neck, physical therapy, numerous medications including triptans, memantine, neurontin, muscle relaxers, pain killers, anti inflamitory drugs, the list goes on.

Today I have very little traditional headache. I have small daily bouts of tension in my neck head and face. Daily however, I'm feeling constant lack of cognative ability and balance daily. My vision gets pretty blurry at times and my ears have been ringing loudly and steadily and consistantly for over almost 2 months. My neuro has put me on temporary disability as my mental function has diminished significantly and I'm losing my ability to drive. I'm a 42 year old male married, who's about to lose my job with a 3 year old daughter.

My neuro is at a loss and is in the process of doing all my MRI's and other tests over again.

Nancy Harris Bonk Moderator
Hi Lou93908,

Thank you for sharing your story with us. I am sorry you are having such a difficult time, I understand how frustrating that is. Let me see what information I can give you that may help.

The first thought that comes to mind is it may be time to get a second opinion, especially if your doctor is running out of ideas. Getting an accurate diagnosis is important this way we can learn all we can about whatever condition we have and get the proper treatment. It may be beneficial to see a another doctor to discuss the cognitive issues you are having.

Typically migraine attack symptoms go away when the attack ends. If you are having daily, chronic cognitive issues, I would definitely seek out another opinion. To make things a bit more complicated, there are four phases of a migraine attack; prodrome, aura, headache and postdrome, but not everyone experiences each phase. For example, I usually do not get visual aura with each attack, if ever. When you get a chance you can read this information on the phases of a migraine attack; https://migraine.com/infographic/the-four-phases-graphic/.

I hope this helps,
Nancy
usedtogarden Member
Have they done a lumbar puncture to rule out that it could be a CSF issue?
If you haven't yet been to an otoneurologist, that would be someone else I would visit. I am very ill like you, and honestly, I get more thinking outside the box from people other than my regular neurologist. I have had 5 brain MRI's and they have all been normal. I have had 3 head CT's and they have all been normal. This is very common for people with migraine, although I can understand performing them at least once and when symptoms worsen.
lou93908 Member
I'm very familiar with the different phases of migraines. Rarely if ever do I have a "phase" that follows another.

While I have some possible "phase" or another almost every day they are random. One day I will be horribly fatigued, another day cognatively difficient, another day extreme tension in the base of my skull/top of neck, another day aura, another day sharp pain in the base of my skull/top of neck, another day I will have pressure in my face and sinuses but no congestion. I can have almost any of these symptoms separately or together but I almost always have something. 90% of the time I have extreme tension in the back of my head. Enough tension that the muscles will literally turn my head or shrug my head into my shoulders involunterally if I try not to fight it. I have tennitus 100% of the time in either one or both ears from noticeable levels to as loud as the adverage family room television.

My neuro is doing all my tests over again. Mri again Monday. UCSF headache doc says I have chronic migrane, none of the meds he have given me have done anything. Lyme disease doctor is running my blood tests again for the 3rd time. My physical therapist and I have decided not to continue sessions as they cause as much good as harm depending on the day.

I haven't had a lumbar puncture. I'm open to anything at this point. It's only getting worse and I'm afraid to go out and do anything for fear it might get worse.

Also, if anyone thinks my condition sounds like chronic migrane please let me know. If it sounds nothing like what you chronic migrane please chime in too.
usedtogarden Member
One thing the radiologist mentioned to me (and my otoneurologist) is that it's hard for them to read MRI's if they don't have contrast. Did your original MRI include contrast (did they give you an IV and inject dye into your arm)? That could just be the opinion of those particular doctors, but they made me redo the MRI's with contrast.

One thing you can try to see if CSF could potentially be an issue is to try lying perfectly flat (no pillows or one very flat pillow) for a while and see if that changes your headache. If your pressure is too low, one symptom is your headache will usually be better while lying flat, then spike when you stand up. If your pressure is too high, staying upright can help. My otoneurologist found it easy to test me for high pressure by putting me on diamox for a week to see if it helped. If your tinnitus is so loud it's like the television is playing constantly (even mine isn't that loud... it's just like insects buzzing in the summer), and your doctor has no more ideas, please consider an otoneurologist (ear nose and throat+neurologist) or headache specialist. My experience with my neurologist has been that they are fine with migraine when it stays within a typical "box" of symptoms. Once it goes outside that box (which mine has and it sounds like yours has, too) they have no more ideas and it's time to get to a headache specialist or some other sort of specialist to get to the bottom of what is going on.

Chronic migraine is a certain number of headache days per month with a certain number of those being full blown, incapacitating attacks. Migraine looks different for different people. Another option you might ask your doctor about is botox, which is helpful to some people. Injections are given all over the head, forehead, and shoulders, and this helps break up some muscle tension. Most of the meds you mentioned don't help me (except gabapentin), but botox does.