Now the good stuff...
Known Triggers: at this point I have no known triggers that I can figure out through headache journaling, hospitalization for migraines/clusters, psychological study during this hospital stay, etc.
What makes them worse: Migraines--light, motion, noise. Clusters are somewhat opposite-- I want to move, bang my head on the nearest thing, sitting still/laying down/closing eyes all that makes them alot worse.
How many days missed: don't work/no school, but have missed plenty of time with my little ones!!
Medications tried (RX): Vivactil, Topomax, Verapamil, Indocin, Imitrex injections, Midrin, Toradol, DHE intravenously, steriod bursts, Phenergan, Periactin (sp?), Methadone--very short term in hospital, Oxygen, Pamelor--I'm sure there is more, but forgot (this is more recent)
What medications work: Hmm, not sure yet. Still trying to figure it out! DHE breaks cycle. Methadone knocks it out, and me!! Currently on four as preventatives, we shall see. No longer using triptans.. Oxygen great abortive for clusters!!
Other Pain Relief: Physical Therapy for rehab and hopefully some pain relief
MRI scan awhile back, having MRI/MRA done again--we will see.
What doctors have you seen: neurologist; headache specialist; physical therapist
Wanting to try: ???
I admire you. I don't know how you manage to take care of children and deal with these headaches. It takes a strong person to be a mom and suffer from bad headaches.
My husband and I have decided not to have children, partially because I couldn't go 9 months without medication and because I don't think it would be fair because I'm out of commission so much.
Thank you for such a sweet and thoughtful comment! I think it says alot that you took the time to think about the future and your medical issues before having a family...My situation changed drastically after having my last child...
I've had migraines for a long time, but only maybe one a month. I would just take meds, crawl into bed, sleep it off and be done with it...During my last 2 pregnancies I had high blood pressure and lots of headaches during them, but they were chalked up to that!! Over the years, I had really bad headaches that always came in bizarre cycles that were horrible but, never lasted more than 5 or so weeks at a time (now know they are cluster headaches)...But, once I got past it, I just blocked it out until they returned, and now that I'm on meds and have oxygen--so far so good!!!
After my last baby, my body just kinda fell apart. The migraines hit with a vengeance about 7 months ago. Sometimes, I just wish I could find the trigger so I could avoid it...
It breaks my heart that my kids have to see me like this. I have learned when I am doing well to make the best of my day with my family, and hope that all the preventatives will finally be enough!
Kids are a tough decision when you have this condition...I'm glad I have my kids now I think they are what has kept me going on the days when I want to give up, but I do feel guilty that they are not getting everything they need...Anyways, thank you I really needed that today!!
Thank you KYMark for the encouragement and the input, it is much appreciated. You are right my family really is beginning to learn to adapt and I am very careful to make sure I never ever take my fustration out on them by raising my voice or ignoring their needs which could be easy to do...
I'm glad that you have such a great support system from your family, I'm sure that makes such a big difference when it comes to dealing with all of this...It's just a shame that so many of your family members have had to have this disease!
I agree with you on the treatment part, I am really hoping that rapid strides cont'inue to be made over the years and more and more continues to become available to our children and hopefully us to treat these darn things!