Hello from Kentucky!

I had my first headache during a bio lecture 2 years ago. It felt like someone had shoved an ice pick above my right eye. It took everything in my not to scream in the middle of class. I excused myself quietly and spent the next 20 minutes in a bathroom stall thinking my brain was going to explode. My right eye was droopy and swollen plus it looked like I was weeping out of just one side of my face.

I went to the Dr. the next day who brushed me off pretty quickly. But when the headaches started waking me up nightly I made another appointment and when nothing showed on multiple tests it was actually suggested that I see a psychiatrist. He asked me if I had even considered checking myself into the psych ward.

Then a new Dr. started in my town 2 weeks ago and I made an appointment and she sent me to a headache specialist who determined me to have cluster headaches. I was put on 100mg of Topamax 50mg in the morning and 50mg at night.

I must say that I absolutely hate this medication. I feel dumber than a sack of potatoes. And no matter how much I eat I am dropping weight like crazy. I have no appetite at all but I force myself to eat. Plus my entire body tingles. And I am dizzy all of the time. And it is making my anxiety 1000x worse. But if it prevents these headaches I'm all for it. I am supposed to go back Monday to determine whether I am going to be on Oxygen or Imitrex as an abortive.

Hi there and welcome.

You need to get a script from the specialist for home O2 As soon as possible. While Imetrex works for many, as indeed does Verapamil, you are restricted by daily dosages. Not so with O2.

There are many here who know much more about medical preventatives than I and I'm sure they will give good advice.

Read lots and ask lots of questions.

You are among friend now. Not Doctors, but expert patients.

Keep us posted.

Peter.

I was on topamax stuff made me dumber than a box of rocks I got lost going to work twice and I worked there for 10 yrs.Go to the medication and treatment forum and start reading 123 pain free days you will see what I"m talking about a lot of people are on this.

Mark

Hi and welcome

The side effects you are getting with Topamax are just what I got when using it as a preventive for the migraines I also get. I totally hated it too, other than it helped me lose a few extra pounds (kilos) that I needed to lose from remembering that I had to eat.

There are alternative preventatives that your doctor can give you. Ask about going onto verapamil or lithium.

There is also the vitamin D3 route which many of us have had great success with (3.5 years CH pain free for me).

I'd also get oxygen and imitrex as preventives. Oxygen is great (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE has a lot of useful info) but it isn't always the easiest thing to move around, so that is when imitrex injections or nasal spray (not the tablets) comes in handy so you've always got the ability to abort a CH. It should not be a choice of oxygen or imitrex.

Your experience with how many doctors are clueless is far from common, especially for women.

Keep reading all you can here and ask all the questions you can think of.

Topamax really slowed me down too.  I do electrical engineering, and it took me 2 weeks to finish a small printed circuit design that would have normally taken me one day to do.

I stopped the Topamax soon after that.