I'm so sorry you are going through this.

Just three thoughts.

When were your last blood tests? Did they test your CO2 levels? It has to be taken out of this vein in your wrist to be accurate (not the usual spot in the crook of your arm). Low CO2 can either mean you were hyperventilating, or it could mean you have metabolic acidosis, which would make you feel nauseous, dizzy, weak, and make you pass out. Even if your CO2 is borderline, your doc may want to put you on potassium supplements (the ones that are big enough are prescription-only. One tab is the equivalent of eating 60 banannas. I take 3 a day.)

The other thought is to ask if they did one of the special MRIs with an extra high-powered machine, with extra thin slices. (Here it's called an epilepsy-protocol MRI, don't know what it's called there) It catches small stuff a regular MRI can't, including pituitary tumors. (They sometimes don't affect blood test results)

I know that you are careful about this - Drink TONS of water. My doc has me drinking 12 glasses a day to stay hydrated and to prevent kidney stones. Dehydration can cause nausea, dizziness, and passing out.

More hugs. Hang in there.

P.S. Diamox can cause both metabolic acidosis (it did for me), and it can cause dehydration.

They have not checked for that. I will ask my new neuro. I am switching. I have had to ask my neurologist for medications or tests as a result of things I've read here or on the web! I don't know why I didn't change docs sooner.

I guess passing out is just very scary for me. I have 3 children and two are still under 10. I worry about them being scared for me. My husband has been so great but I feel sorry for him too. Who wants to be married to a 32 year old who's got the health of an old lady?

Hi.
I am sorry that you are going through this.
You should not be passing out. Your doctor should be wanting to get to the bottom of this. What if this were him?
That is what I ask my doctors. "If this happened to you, what would you do?" I am sure if your doctor was passing out, he would not want to be sent on his merry way.
Good thing you made this decision. Switch doctors. I would call a new neuro tomorrow and say I passed out and I need to come in ASAP. I am in NYC and have access to many doctors and my doctors know if I ask for an appt. for that day, it is because I need it.
Take good care and please update us.

I have not completely passed out but I do have the rest of the symptoms you describe. It sucks .
please be careful and hang in there.

I am sorry you are feeling this way. I have been feeling the same way lately. I was so dizzy on Friday I could barely keep my eyes open then later that night I was sick on my stomach. Every time I stood up it felt like I was going to vomit. I did not know it could be related to the PTC. There is alot I still do not know about this condition. I have learned more here than I have learned from my doctors. I may be calling him tomorrow. Hang in there.

I have this, it is called POTS
short for Postural Orthostatic Tacycardia Syndrome. Sounds like you have this too with syncope. This is easy to diagnois, tilt table test with some nitro spray. If you do end up getting the test sometimes the table cannot help reproduce your symptoms. I asked the cardiologist to unstrap me from the table and let me sit in the chair briefly, this did the trick.

Yes, I also have bp too low , but when you stand, sometimes lay on ur belly, or other weird movements, bending forward then down to pick something up can exacerbate and send you into what your experiencing.

There are meds they can give you, however, they mess with iih. Most treatments consist of lots of water and salt to keep bp elevated, but like I said that worsens iih. Lots of exercise, your autonomic immune sysytem is deconditioned. How ya like that, isn't that special. Sometimes...........I think all the time, illness brings this on, along with iih. Just my 2 cents.

Good luck,
Mary

I am going to push my new neuro harder for answers. I live in the Kansas City area so I have access to (supposedly) decent medical care. I see both a nuero surgeon and my brand new nuerologist next week. Like everyone here, some days are better than others with this. I'm blessed that I can still work part time and keep my health insurance.

Thanks for your responses.

I was just going to reiterate the "lots of water" suggestion. I have naturally low blood pressure and the doctor told me it's really important to remain hydrated to keep my BP up. I will be upping my Diamox this week and he's given me strict orders to drink a lot of water so that I don't get too low and start feeling whoozy.

My daughter was also diagnosed a year ago and has a cyst, as well. The doctors were very confused about her symptoms, at first. She wasn't complaining of vision loss or headaches, but vomiting, dizziness and actually passing out. It was while she was in the hospital that they discovered her paps. They believe when her pressure is high, the added pressure on her cyst causes the fainting spells.

I suffered for 6 years- they took my license away and everything. I had syncope episodes. Had the tilt table test- showed my low blood pressure. My Neuro found that I had Chiari 1 Malformation. I had the surgery and only had 2 episodes since the surgery. Found that my cerr. tonsil (left) was wrapped around my brain stem. Had the numbness, vison loss, hearing loss and all seemed to be on the left side. I hope that you find some answers. I know the struggles of everyday life. Good Luck to you.

Wow! Very strange because even my vision loss is in my left side and most severe paps in left side. I think the Dr's need to get to the bottom of what's going on. I mean, they confirmed my high pressures with the LP but maybe my PTC is caused by something else or a side effect of something greater. That's my gut feeling.

You guys are so helpful in giving me things to research and ideas to bring up to my new neuro. Maybe I've picked a better doc this time and he will suggest some of these tests first! But if not, I will ask about them. My appointment is March 28th neurosurgeon and April 4 new regular neuro.