Hi, I just found this forum (started looking at the recommendation of a co-worker).  I've never been diagnosed with a 'chronic' condition before, so never really even thought about a support group format.

I'm a 51 year old guy from Bucks County PA, and my headaches started on the Friday before this past Labor Day. What started as an afternoon headache (which didn't respond to 6 Advil), quickly developed into a nightly excruciating ordeal.

Like clockwork, my headaches woke me out of a sound sleep between 1 - 2am every night.  Laying in bed was excruciating; I went the better part of the first week with little to no sleep. After two weeks, I went to my primary care doc, who sent me to the ER for bloodwork, CAT scan, etc. They sent me home after an IV of anti-nausea medicine (which they said also is effective for headache), and told me to see a neurologist if it persists.

Next stop was Capitol Health Systems in Hopewell, NJ, Department of Neurology.  They sent me for MRI (which showed nothing) and prescribed a combination of anti-seizure meds and NSAIDS.  After worsening of the symptoms, the anti-seizure meds were doubled in dosage, leading to forgetfulness, incredible nightmares, agitation, and an inability to function 'normally'.  My wife, compassionate to my situation, started searching for another doctor (who would take my insurance!), and found Dr. Roderick Spears at UPenn.

Through Dr. Spears' protocol of Verapamil and a nerve block, the cycle of my 'nightly' headache has been disrupted, but I'm still suffering almost daily severe headaches which require an injection of Sumatriptan.  I believe that this cycle of nightly headache may be over for now, but I understand that I have the next cycle to look forward to.

After speaking to Dr. Spears today, he's increasing my dosage of Verapamil (again) to over 1,000 mg / day, and wants to start me on Lithium if the daily headaches don't stop within a week. His correspondence of this AM follows:

'Hi Mr. Blackman,
The easiest thing to do is add an additional 120 mg tablet of verapamil to your regiment. I don't think it's become uneffective but we are at the upper limit for dosage. The next step would be adding another preventative to your regiment to get control. I would actually recommend Lithium next. No weight gain, cognitive side effects and very effective for cluster, we just have to keep an eye on you kidneys.

Dr. Spears'


My question (as if I have only one) is has anyone on this forum been prescribed lithium, and if so, has it offered success? 

Any advise from my 'peers' would be appreciated.

RB

Hi Rob
I have just been prescribed lithium, although I have not actually started taking it yet.  I asked my doctor for it as it is a well known, and effective preventative. Don't be put off by it's primary usage as many drugs are used for other things too, and lithium is one of them. If you find you can take it OK with little or no side effects it may be just what you need. Lots of people here take it.
Hope this helps.
Maz.

Thank you Maz.  Since my earlier post of today, Dr Spears has also suggested that I may want to try Dihydroergitamine and / or Methergine.....My recollection is that both of these drugs are similar in makeup to LSD, but without the hallucinations.  They have a whole host of warnings, not sure if I want to go there.  If you you, does anyone have any experience?

Not me, but take a look at our sister site "ClusterBusters", - the bottom tab on the left of your screen. Theres lot of info there about alternatives.

Rob,

  Ask your Dr. to give you a prescription for oxygen.  There is a link to the left of where you're reading this now that should tell you everything you need to know.  A regulator that goes to at least 25lpm and a non-rebreather mask.  Both are important.  Most of us get ours filled at either Apria or Lincare.  Both are nationwide.

  Be careful with the Imitrex.  If you use it too often it can cause rebound headaches. 

  Together with the Lithium, oxygen and the D3 regimine, you should be able get a good handle on your clusters.

Linda