Worst HA EVER!

[Jennyfoo]

After a better morning yesterday, I started feeling really awful in the afternoon. My chest was horribly congested and I kept coughing. I took mucinex and sudafed. In the evening, I was hit with the worst pressure HA unavoidable. I couldn't move my head at all without agonizing pain. Even talking made it worse. Horrible pain behind my ears, in the back of my head, around my jaw, and it felt like knives were stabbing into my eye sockets.I couldn't move my eyes in the sockets without excruciating pain. I kept sweating and getting chills, but no fever. My vision was very blurry and I was so dizzy I could barely walk to the bathroom. I'd have gone to the ER if I thought there was anything they could do to help. It was so painful that I couldn't sleep. I finally passed out around 4:00 am and got a few hours of fitfully sleep.

It's about 25% better now. Sill unbelievably painful. Still the same symptoms. I wish my dr would take my symptoms seriously. She insists my herniation is too small to cause problems, despite my Opthamologist finding I have papiledema. I feel a visit to her would just be a waste of time. I feel I should see a dr, but I know there's not much anyone can do. My neurologist was completely useless. I need help, but have nowhere to turn.

I guess I'm just mainly venting/whining. I'm just in so much pain I can't stand it, and I'm attempting to take care of my 3 year old while Hubby is on conference calls for work. It's taken me over 1/2 hour to write this, because my eyes hurt so bad.  I just want it to stop!

[cocobean2010]

I feel for you Jenn, hang in there, I know the pain of your symptoms are hard to bare but hopefully this new doc will provide you with some better insight. If I were you, I would go armed with all the information you have about Chiari to that appt' and see what he has to say; and if he brushes the Chiari off, pull out the literature and insist he go thru it with you...Tell him how you have struggled and waited for his expertise and that you need quality of life back...I wish I could offer you more than a few words of support. I can't imagine how you're coping with having 3 kids to take care of, let alone yourself..Just try to keep your spirits up!! My thoughts are with you!! (( Gentle hugs ))

[Jennyfoo]

Lol! I thought it didn't post. I forgot to expand. Ugh. Well double thanks.

[Jennyfoo]

Well, after 3 days, I woke up this morning feeling a bit better. My head still hurts, always does, but it's no longer so bad that all I want to do is lie down, grabbing me head, and cry.

Hopefully it doesn't come back at that intensify...ever. I'm still coughing a bit, and that's still hurting my head bad, but my sinus pressure has let up too.

Thank you all for the advice, concern, and just for being there for me. I really appreciate it.

TTFN,
Jenn

[Jennyfoo]

Well, after 3 days, I woke up without my head hurting as bad. Oh, it still hurts, but not the kinda hurt where you just want to grab your head and cry. So hopefully it's let up for good and doesn't come back so bad. Still having weird jerks and stuff though. Just dropped my iPhone while typing this. I can tell this new symptom is going to be lots of fun.

Thanks everyone for your advice, support, etc. I appreciate it.

[rod44]

It is so frustrating that  and Bureaucracy and red-tape comes before people especially people who are ill.
I think everyone on here understand just what you are going through with this HA so vent away. I hope you feel better soon and can get to see a NS or NL who can help.

Ray  

[cozybee]

Sorry Jenny that you are being put through the ringer like this. Keep us updated and let's hope the docs at UCSF will be able to help you!

[n40066]

oh jenny...i'm sorry.  what a battle.

[Jennyfoo]

my med group won't let me go out of area. I had to fight tooth and nail to get approved to see Dr. Barbaro. They will only allow you to see the local specialists in their network. It's just terrible.

[n40066]

so....is there a reason you have to stay local?  if you can find a specialist, even if you have to drive an hour or two to get to him/her, it's more than worth it for the quality of care you will recieve!  not to mention the reduction in stress and anxiety levels!!!  just a thought...

[Jennyfoo]

I'm near Sacramento, so not close to Fresno.

Getting a new dr isn't really an option. My dang med group only has 2 neurologists local. They are way backed up: I had to wait 3 months to see the worthless one, and the other neurologist, I did call awhile back and ask about seeing. No, they're not familiar with chiari, and they have a 4 month wait to get an appt.

I'm going send Dr Barbato an e-mail and see if maybe he could get me in to see a neurologist at UCSF who's more familiar with chiari.

I should have switched med groups to ucdavis months ago, and just started fresh. I didn't have a clue that my current med group would be so incompetent though. If I switched now, I lose all referrals, including dr Barbaro, my pain Mgmt dr, and rheumatologist. Not something I can do.

[n40066]

is there anything to stop you from starting over with a new dr?  get out the phone book and start calling!  ask the receptionist if the dr is familiar with cm and try calling just nl...you can usually make whoever you want your pcp....if you don't have restrictions, start looking for a nl with some knowledge to make your pcp.  at least it's another direction to move in and will keep you going.  if you stop, it's very easy to fall into a very deep and dark depression.  and that's a lonely and scary place to be, especially when you are in such pain.  it's a lousy ride on the roughest road you will ever travel, but when you do find the right dr, it will be so worth the journey.  our bodies can handle more than we think....just look at what we deal with on a daily basis!  hang tough, my friend.  i have every faith that you will indeed find the right dr very soon!
elizabeth

[cozybee]

If you are close to UCSF how close are you to Fresno?

[Jennyfoo]

Ya, my neurologist was completely useless, said i  just have migraines, ignored the neuro symptoms completely. Basically told me to take a hike when I insisted he look further into chiari being the problem. A week after that appt, my Opthamologist found the papiledema. I've got a surgical consult with Dr Nicholas Barbaro at UCSF Dec 22. The delays have been outrageous.

Good idea about giving info to my dr, but I've tried. I printed up some info for her and took it to my last appt. She wouldn't even take it, insisted "Your Brain herniation isn't big enough to cause symptoms." when I argued with her, she said "I'm not an expert, that's why we're referring you to UCSF." She was not willing to learn.

I feel like I'm just stuck. No help available. My doctors have completely let me down. If it didn't hurt so bad, I'd get angry, or cry, but that just makes the pain even more unbearable.

I have pain meds for my arthritis. I took a double dose of my percoset that I have for breakthrough pain. It's not touching this HA and head pain.

[n40066]

forgive me, jenny, i'm behind the times and having memory gaps at the moment.  you obviously aren't seeing a specialist.  is this because of insurance issues?  what would happen if you were to print off some infor on chiari from some of the research sites and hand deliver it to your current dr...especially the parts on chiari 0...you never know what might help get thru to her!  just go in and tell the receptionist that you are in pain and need help.  please see that your dr gets the information on your condition so that she will be better qualified to help you and ask her to call you at her earliest convienience.  what is she going to do, say no with a room full of patients listening?  anyway, it's just a thought.  
thoughts and prayers are with you, my friend.
elizabeth