Severe Headache, Neurologic Symptoms

[TommieB]

I am posting this again because I really need help.  I've had a severe, persistent, incessant headache for four months.  The symptoms are bizarre, and came on very rapidly.  It started as a cap of pain at the top of my head, sometimes squeezing, sometimes pressure, then burning and tingling.  It then spread to the rest of my head, sometimes on one side, sometimes the other.  Sometimes back at the top, sometimes at the back, or behind the ears.  In other words, the pain travels.  My ears hurt off and on, and I have intermittent tingling in the right side of my face and in my legs, arms, and chest.  In addition, I have tremors in both hands, and episodes in which the skin over my whole body feels like it is on fire.  I also have the sensation of pressure/heaviness/hardness in my chest and esophagous.  And there is some problem with my right eye, diagnosed as aniscoria, but no apparent reason for the pupil's uneven dilation, and the optometrist says the optic nerve and retina are healthy.  The eye also hurts more often than not.  And I have general fatigue, and often feel weak and shaky.  I have had a CT, MRI, and CTA of my brain, and an MRI of my spine, all normal.  I have also had a lot of bloodwork done, and again, no sign of infection, inflammation, auto-immune disorder, etc.  The doctors are baffled.  I've been referred to a neurologist, but there's a waiting list (County Hospital).  Has anyone ever experienced anything like this?  What could it be?  

[marileew]

Hey there,

When I was on amitriptyline, it did not help with my pain but yeah... it did make me sleepy! So, if it is helping with your sleep, you probably don't want to go off of it. But, if it is NOT helping with your pain, then I think that as long as there are no other reasons why you can't take anticonvulsants (specifically topamax) then you should probably give it a shot. Although your doctor told you that you would have to see a neurologist first... this is a good idea... you could try to see if getting in to see a chronic pain specialist would be faster (and some hospitals have these too... like, one of the hospitals in my city has a chronic pain clinic and even if patients see doctors outside of the chronic pain clinic in the hospital, they often end up going to see them in the hospital anyway because they all work in the hospital and end up booking appointments on their hospital days if that is when patients can make appointments, etc.). So, see if your hospital has a pain doctor / pain clinic / chronic pain specialist and if you can get an appointment sooner then they might be able to prescribe you topamax.

There are some situations where people can't take topamax... it can increase the chances of kidney stones (that is one of it's worst side-effects, a rare one, but still) so anyone with any sort of bladder conditions or kidney conditions usually can't take it. Although, I know one woman who does have a bladder condition and her and her doctor still picked topamax and the eventual kidney stones she would have to suffer (she's already had 2 now) because it has helped improve the quality of her life so greatly. In my case, I have no medical conditions like this so I can take it and as long as I drink a glass of water every time, it is likely never to be an issue because unless you have a kidney or bladder disease it is such a rare rare side effect.

If you do get into a pain clinic or get to see a pain doctor at the hospital, another thing they can do is nerve blocks or trigger point injections. They can hurt a bit, I'll warn you! But, for stopping pain for a week or two, a lot of people find it worth it! But, your pain doctor would then be the one who would tell you if it was appropriate in your case. I get trigger point injections done, and although they hurt me a lot and I have to rest the day I get them.. then the next dew days I am very mobile and pain free! A friend of mine gets nerve blocks, which are like trigger point injections but a little bit more intense and for more severe pain... and, again, she's out for about half a day to a day after she gets them done, but then she only had to deal with break-through pain for the rest of the week. And, we both get these done by pain specialists. I get mine done at a private pain clinic (they're covered by pubic health even though they're done in a private clinic) and my friend gets her shots done in the hospital. But... you would need to see a pain specialist first in order to discuss this possibility.

[TommieB]

Thanks for your reply.  My doctors have looked into chronic migraines, and have tried me on almost every migraine medication in the book, to no avail.  I have NOT, however, been prescribed any anticonvulsants.  One doctor did mention them, but said I would have to see the neurologist first.  However, my appointment is not until December (I don't have insurance and have to go through county hospital, where everything takes a very long time).  Right now they have me on lorazepam (for the anxiety I have about all of this), Norco (for pain), and amitriptyline (again, for pain, and to help me sleep).  If you have any other thoughts on my situation, I would be glad to hear them!

[marileew]

Severe headaches with associated neurological symptoms can be migraines... the neurological symptoms that you have described that are consistent with migraines are the aniscoria and the numbness and tingling. And pain in the eye is very consistent with migraines.

I am curious to what the doctors have diagnosed this pain as. Have any of the doctors suggested migraines?

The treatment for chronic migraines is often the same as the treatment for ANY chronic pain... with a few differences:

- Daily antidepressants... SPECIFICALLY the antidepressant "amitriptyline" is prescribed both for chronic migraine patients and chronic pain patients. This is NOT because they think you are "depressed"... it is because they are using the medication off label for something else, for pain. For some reason, the antidepressant amitriptyline works on pain.
-Daily anticonvulsants. The anticonvulsant topamax is prescribed for BOTH chronic migraines and chronic pain. I know of other anticonvulsants that are used to treat migraines... but, topamax is one that I know is used to treat both migraines and other forms of chronic pain.
- There are other daily medications such as betablockers that are used to treat chronic migraines, but I don't think they are used to treat chronic pain. There are also other medications that are used to treat different kinds of chronic headaches, such as cluster headaches, like calcium channel blockers... but I do not know if these are used to treat other forms of chronic pain. Botox is used as a treatment for chronic migraines every 3 months, as well as a very small number of other chronic pain conditions that are completely unrelated to headaches... so it might not be appropriate at all in your case. So... if you and your diagnosing doctors are not sure if you have a specific type of chronic headache at this point and all that you know is that you do have SOME type of chronic headache, it might be best to start treating this head pain as general chronic pain and use a daily headache treatment that covers a wide range of chronic pain conditions such as the anticonvulsant medication topamax. You should talk to your doctor about this possibility for treatment.

Hope that helps. :)