Brief Answer:
Have you had autonomic function testing

Detailed Answer:
Good evening. My name is Dr. Saghafi and I am an adult neurologist who specializes in headaches as well. So sorry that you're not feeling well. I have a few thoughts which hopefully will help you find the right track to feeling better.

You use the term "migraines" and "cluster" but can you be more specific regarding your symptoms either prior to, during, or after your headaches come about. In that way, I will have a better sense of exactly what to CALL these episodes. I can tell you immediately without knowing anything else about you that if you are using the term "cluster" as in "cluster headache" that such an entity is rather uncommon in women and more so in your age group. Furthermore, cluster headaches (and migraines) in and of themselves do not typically cause one to be debilitated on the basis of losing blood pressure when changing positions from lying to erect to the point of fainting or near fainting. This is referred to as ORTHOSTASIS.

Having said that there are many authors who believe that those who suffer from migraine types of headaches indeed may also have cases of AUTONOMIC DYSFUNCTION..albeit usually mild and subclinical. If, however, in your case the headache component is an accompanying feature of a more obvious problem of autonomic dysfunction (whatever the reason) then, it is possible that you could have symptoms of orthostasis upon arising from bed.

The following suggestions should be taken under consideration by a physician well versed in autonomic function testing and/or headache specialist in your area who knows how and where to access such specialized testing as I am going to advise you consider below. Some or perhaps all of the tests listed below may have already been accomplished. If so, feel free to post the results so that I can know how people's minds have been thinking so far in this case.

And as your main issue at this time is your inability to come to the erect position without feeling PRESYNCOPAL (nearly fainting) then, I would recommend that you undergo blood work and urine testing to first make sure that all your electrolytes are in balance, that you do not have a urinary tract infection, and that your thyroids, Vitamin D, serum magnesium, and cortisol levels (random as well as serially measured under stress induction) are normal. I might recommend inflammatory markers such as a Sedimentation Rate, C-reactive Protein, ANA, and Lupus anticoagulant if these have not been looked at yet.

You did not mention whether or not an imaging study of the head has been obtained and though I expect it would normal I believe I would like to know that you were not suffering from something such as a strategically placed pituitary adenoma or meningioma or something of that nature.

Finally, to check your autonomic component I would recommend that at the very least a tilt table test be done and depending upon results I might go further with testing you for what is referred to as "Paced breathing Maneuvers" or HEARTRATE VARIABILITY testing and then, follow that up with more autonomic function testing by looking at your sudomotor function (sweating) and so forth.

If this answer satisfactorily addresses your question then, I'd appreciate the favor of a HIGH STAR RATING with some written feedback on your part.

Also, CLOSING THE QUERY on your end (if there are no further comments) will be most helpful and appreciated so that this question can be transacted and archived expeditiously for further reference by colleagues as necessary.

Please keep me informed as to the outcome of your situation by writing me at: bit.ly/drdariushsaghafi

All the best

The query has required a total of 20 minutes of physician specific time to read, research, and compile a return envoy to the patient.

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Brief Answer:
Cervicogenic headaches secondary to neck injury

Detailed Answer:
Thank you for your update with the additional information. This is helpful in understanding your picture a bit more. Am I correct in assuming that prior to your accident in 2001 you did not suffer from headaches of any type? Or have you had migraine headaches (or at least some type of headache) for much longer than since 2001? If the headaches for which your Medtronic device was inserted was based on a neck injury that did not respond to any other form of treatment then, you may have what is referred to as a CERVICOGENIC type of headache (CGH). These can be severe and migraine like in quality, there is usually a clear cut and present neck pathology such as previous site of fracture, surgical manipulation with the insertion of plates, screws, and rods, etc. Generally, speaking whiplash injuries from accidents where there is no obvious neck pathology seen on a radiograph such as an xray or CT scan are not felt to produce CGH's. You also seem to have chronic daily headaches of the migraine type for which you have the intrathecal pump. What type of medication is being distributed by the pump on a daily basis? And do you control how much medication you can receive at any time with a button type of mechanism or is it just a given amount that is released which is beyond your personal control?

Now, please clarify this for me....before this last hospitalization for the status migranosus were your daily migraines under excellent control by your medtronic pump or were you still having breakthrough headaches despite the action of the pump? There is a phenomenon known as MEDICATION OVERUSE HEADACHE (MOH) and for someone who has had headaches as long as you have had I'm sure someone along the line has talked about these types of headaches whereby the use of abortive medications (usually OTC preparations to begin with) are used excessively by an individual. This sets up a cycle of recurring headaches based upon medication abstention (almost like a withdrawal type of phenomenon). The same can happen when using prescription medications or medications that are delivered from a pump. Has this angle been considered in your case?

Is there a neurologist following your case or is it strictly pain management who is working with you to control and adjust your medications for headaches. I think that depending upon the type of medication being dispensed by the pump and also the history of how much of that medication has had to be used since 2009 there is a distinct possibility that you could be at risk for MOH. The definition of MOH is that headache which occurs secondary to the use of more than 15 doses per month of simple analgesics (OTC's in general) or the use of more than 10 doses per month of prescription medications such as triptans (i.e. Imitrex, Maxalt, etc) or narcotics/opiates/synthetics (i.e. Tramadol, butalbital) or combination meds such as Fioricet/Fiorninal and such.

Again, just based upon what you've written it sounds as if you're mainly (if not exclusively) followed and adjusted in your medications by the pain clinic and not by a neurologist who is directing the use of the intrathecal pump. If that's the case I believe it is definitely possible that you're at high risk for MOH forms of headaches and without proper recognition and adjustment for this (i.e. drug holidays from the pump with bridging meds in between or other possible infusions such as Magnesium, Solumedrol, Depakene, etc.) you could very well be at risk for status migranosus.

You mentioned cluster headaches with a cycle of about 1 every 20 minutes for a period of 3 days. Did you receive a DHE 45 protocol when you were hospitalized in order to break the cycle of the status migranosus? Cluster headaches are defined not just by frequency of headaches of a certain severe nature but they must be accompanied by AUTONOMIC SYMPTOMS which most commonly manifest as tearing of one eye, nasal congestion/stuffiness on the same side as the red, teary, angry looking eye, with durations between 15-180 minutes. Cluster HA's are NOT migraine headaches but rather are generated or caused by AUTONOMIC DYSFUNCTION and for that reason are treated most successfully with Oxygen therapy. They are not common in women compared to men but do occur in some cases.

For all these reasons it is possible that your status migranosus was triggered by the kindling of chronic daily headaches which may in fact be MOH types of headaches. These simply went out of control and hence the refractory nature of the episodes to your usual rescue therapy of Dilaudid which is very risky since there isn't much else up the ladder for that type of pain relief with the exception of methadone or morphine drips.

The orthostasis is likely part of the picture of being dehydrated from not being able to hold fluids down and perhaps in part could be due to some autonomic dysfunction based upon either the chronic use of pump medication into the spinal cord which over time can cause such symptoms.....(again, the utility of having a neurologist following you in close contact so as to make sure you get the proper breaks from the pump so as not to kindle your headaches into events of STATUS).

I mentioned magnesium earlier. There are those who advocate its use. I'm not a huge fan of it but I have colleagues who really believe in its power. Have you ever been looked at for possibility deficiencies and perhaps as an infusion candidate? Other complementary medicine techniques which at least 10-20% of my patients have found tremendous relief with would be acupuncture (specifically AURICULOTHERAPY) and the use of a device known as a SOOTHEAWAY machine (www.sootheaway.com). I have no stock interest in that device (rats! LOL) but we distribute this machine in large numbers through the HEADACHE CLINIC at the VA Medical Center where I'm in charge of the Headache Clinic and I would say that upwards of 95% of my patients referred for this machine get tremendous relief. You may wish to look into these options for your headaches.

As before, if my answer has given you more insight and help into your condition then, I'd appreciate the favor of a HIGH STAR RATING with some written feedback on your part as well as the CLOSING THE QUERY on your end (if there are no further comments). This would be greatly appreciated so that the question may be expeditiously transacted and the thread archived for colleagues who may be dealing with similar patients and circumstances.

Please keep me informed as to the outcome of your situation by writing me at: bit.ly/drdariushsaghafi

All the best and I hope these stormy episodes can be smoothed out a bit. Remember, what I said about getting hooked up with a neurologist (ESPECIALLY A HEADACHE SPECIALIST) who can collaborate with your pain management folks otherwise, complications of status are at risk of happening again. I really believe you could benefit from drug holidays and other interventions so your body does not keep reaching for the maximum types of drugs to quell its headaches.

And keep staying in shape....I didn't specifically mention this but exercise can help in large measure if done for the purpose of maintaining good cardiovascular tone. I KNOW YOUR WEIGHT's not an issue....105...Wow! Good for you....you didn't say how tall you were but I'm thinking around 60"? I'm a bit of a physical fitness junkie myself but my days of 105 are LONG LONG LONG behind me....again, I say, "Rats!" HAHA!

Be well young lady....Be well!

The query has required a total of 62 minutes of physician specific time to read, research, and compile a return envoy to the patient.

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