Really Discouraged

[abetterjulie]

After having the two thunderclap headaches, a visit to the ER with a head CT and a spinal tap (both normal), and then waiting all weekend to hear from my neurologist...he has told me to stop taking Midodrine. He wants me to take Periactin at night. While he acknowledged that my life will totally suck once again off the Midodrine, he can't see me. I have an appt in August, but as he said, that is far away. He "might" see me some Saturday if his clinic needs to be open in Columbia for a sweat test on somebody.

All in all, not encouraging at all.

What I got from him was:

Stop doing anything that might cause it again, as it could be bad.

He thinks I'll need to have more testing done.

If it is the Midodrine, he will find another solution.

***** to be you.

Keep in touch.

Why can't he just order the testing now? He sounded like he was thinking I would need an angiography of the brain. Is there a reason I can't just get that done and over with so that I can enjoy my summer? I had plans, you know. I wanted this summer to be fun. I BOUGHT A SEASON PASS TO THE LAKE ALREADY! Sorry, but I am so so so sad and frustrated. I don't know what to do. I lie awake at night worrying, now. I thought I was over all this. I thought we had it figured out. I was just starting to accept my limitations, became grateful for what was left, even started moving forward with a home business...now what? Lower my expectations even more? Hide my sobbing from my daughter? Pretend I am fine with losing the whole summer to this thing?

Maybe I should go see my primary care doc? She has no freaking clue, but she could maybe refer me to a LOCAL neuro that could see me before August? I just don't know what to do and I am sad and scared.

[Sallysblooms]

I am sending HUGS! I don't know anything about that med. I don't take any scripts like that. I sure hope it doesn't happen again!! I would just ask him to do the tests so you can relax and enjoy the summer as you said.

[lieze]

I am right with you in that boat.

Maybe you will have some good days where it's not so hot and you feel like you can attempt to get out.

I love my family so much.

I am staying with my mom and dad and we are trying to help the kids have as good of a summer as possible.

I had just bought a beach membership myself.

I love being there and watching the kids play...but...I need to take care of myself right now.

Lots of food and rest and stress reduction as much as possible is on the top of my list.

My heart goes out to you.

I hope you find the path you are seeking.

I know it can be difficult to know which way to turn.

[Magnesiumgirl]

[HopeSprings]

Sending lots of {{{love}}} your way. I dunno, seems like you should have a Dr. that is more available for you. Unless you really really like him, maybe there is someone else who can take over? I understand your frustration with this whole thing. I too wish there were easier answers.

[sue1234]

So sorry, and right when you had a somewhat stable life. I have no words to help, but can empathize with you.

[abetterjulie]

Thank you.

There is only one neurologist in the state that treats this, so I am sort of stuck. I like him, but the availability thing is now real issue. It hadn't been before, except for the initial appt which took almost a year to get.

I am going to see my PCP on Thursday, to see if she thinks I should get a cerebral arteriogram or an MRA. I don't really want to get either, but I don't want to drop dead from a ruptured aneurysm either! I just need someone to tell me that the headaches were benign or be able to explain the reason I got them. They aren't the kind of thing that just "happens", it seems they usually have a clear pathology, and I am scared.

I got upset last night over something, and my head started to pound. It wasn't the thunderclap thing by any means, but it scared me. My SBP was 107 at that time, which was the highest it had been all day, but certainly not "pounding" worthy.

I really need some answers. I can't live in fear of having a SBP over 99.

Thanks again.