Any advise would be appreciated. I do not know yet if I have cluster headaches. I was diagnosed with trigeminal neuralgia a few years ago due to excruciating stabbing pains in my eyes (one at a time and lasting less than a minute). My neuro thought it was more likely to be TN, but possibly CH, and I was put on Keppra. That seemed to help greatly with my pain.

Fast forward to last month. I began having daily headaches in my left eye that would spread outwards from there. I thought they were migraines. I had similar headaches last fall and my GP put me on 50mg of imipramine (which does absolutely nothing). I've tried OTC advil, aleve, tylenol without much luck either. My GP referred me to my neuro who increased my Keppra dosage. He said if that didn't work we needed to discuss cluster headaches and he wanted to start me on Topamax.

My concern is that my husband and I would like to start a family soon, and I'm not sure what to do about treatment. Is there anything any of you would suggest? I plan to be pretty thorough with my neuro tommorrow. I have the first appointment of the day. I want to make sure we get this right.

I've had these headaches for more years than I can remember. I thought they were migraines. I have been told that it was my sinuses. I even had surgery in January, hoping to ease the pain. My left sinuses were blocked. I have had three root canals on the upper left side of my mouth. My headaches are mostly on the left side.

I have so many more questions, but I'll keep it short until I know more.

Thank you in advance.

Well, just an update. I'm not sure if this is where I belong yet. The neuro did not give me a definate opinion. He sent me for an MRI and I do not have the results yet. He did start me on topamax. I am on 50mg now. I am supposed to go up to 100mg but I can barely stand the side effects. My hands and feet are numb and have pins and needles. I am definately "spacy" and forgetful. It also makes me incredibly sleepy. He added this on top of 1500mg of Keppra twice a day which is for the trigeminal neuralgia (for the stabbing pains in my eyes) and 1200mg of neurontin. I'm disgusted with the rate at which he prescribes these medications. As for planning a family, he told me to consult my OB/Gyne. She had told me to talk to my neuro. So I'm in a loop. I see my PCP on June 11th and I'll talk to him. He's been very supportive (unlike the neuro). The neuro just kinda shook his head. He said he thought I would have to stop my meds but he wanted to stop the headaches first.

On another note, I have an appointment with my ENT tommorrow. I'm hoping to have her do a lidocaine injection of my occipital nerves. That tends to slow these headaches down more than anything else.

For the most part, my headaches are down to about half the level they were. I get these odd little aches in and around my eye(s), but they haven't really been full blown. The last full blown headache was about a week ago.

That's all for now.

Hey there,

Here is an abstract (I have the whole article if you're interested PM me - it is 10 pages) of one prescribed treatment for pregnant women - topiramate is def out of the picture, but a few of the other drugs - verap, sumatriptan, seem to be ok for use according to these folks??  with O2 as the Preferred abortive-   I have another short article about a woman that O2 didn't work for in her last few weeks who used nasal lidocaine.

Treatment of cluster headache in pregnancy and lactation.

TP Jurgens, C. Schaefer, A. May. Cephalalgia. April 2009 v29 i4 p391(10).

Byline: TP Jurgens (1,3), C Schaefer (2), A May (3)

Keywords:Cluster headache; pregnancy; lactation; triptan; treatment

Abstract:Cluster headache is a rare disorder in women, but has a serious impact on the affected woman's life,especially on family planning. Women with cluster headache who are pregnant need special support, including the expertise of an experienced headache centre, an experienced gynaecologist and possibly a teratology information centre. The patient should be seen through all stages of the pregnancy. A detailed briefing about the risks and safety of various treatment options is mandatory. In general, both the number of medications and the dosage should be kept as low as possible. Preferred treatments include oxygen, subcutaneous or intranasal sumatriptan for acute pain and verapamil and prednisone/ prednisolone as preventatives. If there is a compelling reason to treat the patient with another preventative, gabapentin is the drug of choice. While breastfeeding, oxygen, sumatriptan and lidocaine for acute pain and prednisone/prednisolone, verapamil, and lithium as preventatives are the drugs of choice. As the individual pharmacokinetics differ substantially, adverse drug effects should be
considered if unexplained symptoms occur in the newborn.

Author Affiliation: (1)Department of Neurology, University of Regensburg, Regensburg,(2)Berlin Institute of Clinical Teratology, Pharmakovigilanz- und Beratungszentrum Embryonaltoxikologie, Berlin, and (3)Department of Systems Neuroscience, University of Hamburg, Hamburg, Germany
Article History: Received 14 January 2008, accepted 9 August 2008

Article note:Arne May MD, Assistant Professor of Neurology, Department of Systems Neuroscience, University Clinic Hamburg Eppendorf (UKE), Martinistr. 52, D-20246 Hamburg. Tel. + 49-40-42803 9189, fax + 49-40-42803 9955, e-mail: a.may@uke.uni-hamburg.de