Headaches

[Rob77]

Hi. Thanks. If anything I over use it. Hours at a time.
I don’t wanna sound too miserable, but this is truly the most horrible condition. I know people have worse, I sometimes wonder what I’ve done…

[nin]

Hi Rob, I’m currently waiting for an apt for my first ajovy injection so I’ll let you know how it goes. It’ll be small dose first as I’m also on effexor and proponanol.

[Rob77]

Thanks @nin. Hope it helps you. I’m arranging for the larger dose now. Should have by next week. Hope it helps you. Are your headaches chronic?

[flutters]

You haven’t done anything. Life is decidedly not fair.

I’ve had MAV for a couple of decades now. My first CAT scan for a brain stem aura was in 1998. I had a big tonic clonic seizure (grand mal) in 2006. Episodic MAV for years before going chronic and disabling in 2017. I’ve tried 16 Rx meds and tons of supplements plus the Cefaly and a Vagus Nerve Stimulator. For just MAV I have open scripts for 8 meds (though five are rescue, one is Botox and I’m technically taking Gabapentin for nerve pain in my spine and neck and athenolol for high BP). I’ve done VRT. I think I can say I’ve had the MAV experience, complete with brain stem aura, constant visual snow and an always present industrial whine type tinnitus. If there’s a rare side effect or complication, I’ll be the statistical outlier.

So what’s my attitude? I have every reason to be angry. I was a superstar and now I’m chilling on the bench. I loved my career. And I more or less left it because I had no choice. But I’m not angry. I’m not a victim of MAV. I feel blessed for having this experience. I am a better person. I’ve learned fortitude, perseverance, faith, acceptance, empathy, the ability to be strong while vulnerable, humility, gratitude. I am more open, more loving, more able to see the beauty in life. Do I get frustrated and down? Do I cry and rail? Of course. But I keep coming back to this space where I remember that life is more precious now and I’m better at living it.

[nin]

That’s fast, will be really keen to hear how you get on. Yes my diagnosis was chronic migrane/persistent daily headache and I still spend on avg about 2 weeks a month with headaches and/or nerve pain. The severity of which has reduced. The break thru on headache came in at 75mg effexor and more so when u i got to about 120mg propranolol. Out of the two, propranolol is possibly the best for the headaches but effexor has been great for the nerve pain which was constant too for a long time. You’ll get your break Rob, it’ll just take a bit of continued tweaking of meds but keep going after it. Keep us posted and

[Rob77]

Thanks @flutters. You have really been through it and have an amazing attitude.
I think it’s the constant nature of the headaches with no relief that gets to me so much. On top of working and being a dad, husband, friend etc.
I’m not ready to hang up my boots yet, too much to lose.

@nin , ta for that. So good to hear people improve. I hope so… hoping to have the ayovy for next week (if dr puts paperwork into tomorrow). I’m on two different drugs to u but I can’t change at this time, as prev mentioned.

Trying to stay positive but I’m being ground down…

[flutters]

Elaine’s (@nin) right. You will get there. I live at about 90-95% most of the time. It took a lot of trial and error, but eventually almost all of us find our way out of the woods.

[Rob77]

I’d take 90%!!! How do I get there!!!

[flutters]

Time, suffering, luck, perseverance and often more trial and error than is in any way reasonable. None of the big things is ever easy. But you will get there. It’s a long tunnel, but there is a door at the other end. You just have to strive to keep moving forward whenever you can. And love yourself enough to rest when you need it.

Be as open and loving to your family as you can be, even in the midst of pain and suffering. This is a tragedy for them, too. And its an opportunity to become a stronger unit and better people for every one of you. I know this from experience. I thought I loved these people before. I had no idea how much I could love them or how deeply they love me. It’s a blessing.

[Rob77]

I know, I just find it so difficult, I cut myself off from them. I haven’t properly smiled for a long time now, everything is such an effort, even a conversation with my kids - as you say it is a tragedy. One I hope will have a positive outcome. Soon…

[flutters]

Do your part. Get therapy from someone with experience in chronic illness to deal with the emotional fall out. Don’t wait for outside help in the form of medication. Do everything in your power to get better sooner - eat appropriately, don’t drink alcohol or caffeine, get fresh air and exercise, meditate or pray, follow a sleep schedule, find reasons to re-engage. Do all of it now and with zeal and re-commit to it every damned day. You and your family deserve better. Go get it. The drugs are one factor of many. Take control of as much as you can, starting with your attitude. If you can’t see succeeding for yourself; do it for them.

[Rob77]

I’ll try to take on board as much as I can. Think I’m having a particularly bad few days. Do appreciate your comments. It’s good to have people that understand.

[Onandon03]

@flutters

You haven’t done anything. Life is decidedly not fair.

My mobile hairdresser’s verdict on Lock Down. Parts she quite enjoyed but she really resented the fact that the Covid threat has stolen more than three months of her life which she felt she could ill afford to lose. Tell me about it sometime I thought. Helen

[ander454]

Yep hang in there Rob, eventually things get better. Seems like you keep trying and that’s the most important thing.

[Rob77]

Many thanks @ander454. Trying to keep going. Not much other choice