I don't know what med you take for vertigo but Antivert (meclizine) is a common prescription given for vertigo but you can also buy it over the counter as Dramamine Less drowsy formula(regular dramamine is a different drug) and Bonine.
I have never taken pain meds really work for my headaches but I have found that anti-inflammatory meds help better than most. I really like Tordal but it is prescription. You might try Ibuprofen 800mg three times a day. Probably wont get rid of the headache but might help a little.
Have you tried taking an extra dose of your lasix. I know you should take meds as they are prescribed by your doctor but if it were me I would try taking an extra dose. Shouldn't hurt as long as your potassium level is ok. If I took a potassium supplement I would take an extra dose of it if I took an extra dose of Lasix.

I'm surprised you're only on 50mg of Topamax...I've always had to be right at 100mg for it to work (but that's just me). Do you take it once or twice a day? When I was taking it only once I moved my medicine time to right before bed and it seemed to make for some better mornings.

MM3 - That stinks! Sounds like all the excitement is probably catchng up with you. I'm guilty of doing the same. I refuse to let this condition control my life. My daughter will only be young once and I want to experience everything to the fullest with her. I will hope that your doctor calls you back with some suggestions soon. Maybe the Dramaine suggested by Bat is worth trying while you wait??
Good Luck!

Bat - You mention Tordal - what is that? Do you take it daily? I ask because my doc put me on Prednisone a couple of times which helps inflammation and my headaches were gone. Unfortunatley prednisone is a medication that is dangerous to take long term. I've tried Ibuprophin at high dosages which doesn't help, but Now I'm wondering about this Tordal you mention. Does it help your headaches? Like you - pain medications don't seem to help me at all - even Vicodin.
Please let me know - I'm very interested.
Thanks! Angie

Oh crap, sorry this is happening to you again, MM3. Everybody had great suggestions to hopefully help you feel better. I know that storms always made me feel worse and my pressure would get so, so, high. I hope you start to feel good soon. Now I know you will not rest, lol, but I hope your dizziness stops and your headaches get better, Blessings, Jazzy

Angeline
Toradol is an NSAID but it too can can't be taken long term. I don't take it now my shunt have gotten rid of my headaches for the most part. It can be given in a pill or shot. It is onlr recommended that you take it less than 5 days in a row. But you can take it then take a break and then start it again. It is usually given prn. Before I was diagnosed I went to the ER and they thought I was a drug seeker even though I had only been to the ER 10 years earlier when I broke my ankle but anyway they gave me a shot of that because its not a narcotic and it really helped me after that I got a script from my PCP for the shots and my husband would give them to me when I needed them. By that time I was on the Diamox so my headaches were not constant. I have not taken the pills before. Since it is an NSAID it is hard on you stomach(like aspirin) and you can't take it if you have heart or circulation problems (like celebrex and all those arthritis meds that were in the news a few years back). I never had any side effects from it. Hope this helps.

Mm3,
You once said that you have Valium, now would be the time to take it, since valium works on the on the nerve and will decrease the vertigo. I have had too much experience with that and I wish you did not have to have it to, I do not wish it on my worst enemy. Meclizine , yes, does help, but if you do have the valium it would be ideal for what you are going through., Don't take any fast movements, or it makes it worse. try not to watch something that has a lot of quick fast movements--on tv, cars driving, kids making really fast jerking movement. Sound will be worse, music and vacuums be careful of they could send you out of the room in such pain, crying and very nauseated to the point of vomitting.
I wish I could come and take care of you. I know how you feel, and I am a pretty good nurse if I don't say so myself. But I know that you have an awesome family there and I know they help you, because you children would learn to love from you and you do have the abililty done pat. Just take care of yourself. Blessings, Karen

Thank you all for your words of advice and support. It took a couple of days for my doctor to call me, but once she did she called in meclizine and valium. As you mentioned, Karen, yes...the valium does help far better than the meclizine so I've actually been taking both together. However, they've only been helping a little. I've found that each day my vertigo and head pain have grown in both intensity and frequency. My doctor sent a script for Dilaudid to my home address a couple of days ago and my husband overnighted it here to Ohio. I had the script filled today and took the med this afternoon. It seems to have helped greatly. However, the doctor said that if I wake up tomorrow morning and still have vertigo and a headache I need to go to the ED. (I know Bax...I can hear you now warning me against it!!! LOL)

BTW...Karen...everything you said about fast movements, the kids moving too quickly, noise of the vacuum cleaner, etc. being too much was right on. I totally wish you were my nurse. I know you would be awesome at it.

I must tell you all that it has been really difficult being here. I always talk about how much I miss my family in Ohio and how much I hate Rochester. How much I want to be near my nephew because I am missing the milestones of watching him grow up. How guilty I feel because I'm not here as my mother gets older. And, my mother is always telling me how much she misses me and the kids. How she wishes I was here so she could take care of me when I get sick. Well....being here has been a rude awakening to the truth. It would seem that my mother is a bit of a hypochondriac and has an addiction to medication. She takes Oxycontin, Oxycodone (the generic form of Oxycontin), and Percocet (which is Oxycodone with acetametaphin). And yes...her doctor knows about it....he prescribes it. So, she sleeps most of the time. She supposedly has a mild case of MS, although nobody has really been able to say for sure. She is always complaining about something different. Her illness seems to be an illness of convenience. When she wants to do something she suddenly seems to be perfectly fine. But, since the kids and I have arrived, she has been in bed. So, while I have been sick, the kids have been without anyone to help them. So, I have been cooking, doing laundry, going grocery shopping, picking up my prescriptions, taking them to the movies, etc. with vertigo and head pain. Nobody in the family has stepped up. To say that I am hurt deeply is an understatement. I would be the first to support my mother if she were truly ill...and there are times when she is...but this is not one of them. And, my brother and his wife haven't stepped up to the plate either. As I don't operate this way, it has been difficult for me to understand. As many of you know, I would go out of my way to lend a helping hand.....as I did for my brother last week when he needed a babysitter for his son when his sitter was on vacation. (Even on days when I was ill). So, today, I finally called my brother and said...."I am very ill. So, here is what is going to happen. You are going to come and pick up my girls and take them to dinner. They are going to spend the night at your house and you are going to take them to the Ohio State Fair tomorrow with your son....ok?".....and, that's what he did. They had plans to take my nephew to the fair anyway. I guess sometimes you just have to tell people what you need.

So...if tomorrow morning I wake up and I am still sick then I guess I'll go to OSU hospital and find out what in the heck is wrong so I can get back home. I know my post here was a long way around the bush, but I guess I had a lot to vent about. Thanks for listening.

MM3

UPDATE:

Went to OSU Harding Hospital yesterday morning for extreme vertigo and head pain..and GUESS WHAT??? This hospital not only knows what IIH is but they have a protocol set up for how to treat patients who come in with the disease!!!! I was taken into a room immediately, was quickly registered, evaluated by a doctor, given Dilaudid, Phenergan and Valium for pain, nausea and vertigo and set up for a lumbar puncture under fluoroscopy. I KNOW!!!! I thought I was in heaven! Everybody was so nice and caring and actually knew what they were talking about! The lumbar puncture was easy peasy. I also was seen by a neuro/opthalmologist who said he didn't see any papilledema. And, the additional good news was that my opening pressure was only 20.5....so, the Lasix must be helping somewhat. However, I will say that when we did the LP I was on my stomach and then rolled on my side but wasn't quite in a fetal position so I'm not sure if he got the opening pressure right? I was always told that in order to get an accurate opening pressure you had to be curled up in a fetal position....anyone know? They did remove about 11 cc's of fluid and my head pain was relieved but, I was still having vertigo and nausea so they decided to keep me overnight for observation. Do you know they actually have a Pseudotumor wing???? NO SH--!!! There were two people in the rooms on either side of me with IH and I totally wanted to go in and hug them and tell them that I understood. You know we are our own alien race and when we see one of our own I just want to hug them!!! LOL! So...that's the good news....

The bad news is....they seem to think it may be time for me to start discussing a shunt as an option. Yes...the one thing I swore I would die before considering. But, as it is, they feel that I'm obviously not getting a lot of relief from my meds and the LP's only provide relief for 12 hours. More and more my quality of life is diminishing. So, they seem to think it is time to have the "talk". I was supposed to come back in October to see the specialists here but they are going to try to fit me in this week. Dr. Katz is the neuro/opthamologist at OSU (who is also a member of the IH Foundation), I will be meeting with him to discuss my condition and any additional pharmaceutical options. And Dr. McGregor is the NeuroSurgeon at OSU who I will be meeting with to discuss shunt options.

I must tell you however, that in many ways my getting ill here in Columbus feels like a blessing in disguise. I will never again go to another center for treatment. I will forever drive 7 hours to see my doctor. I am here to tell you that I have never experienced anything like it. I would recommend the same to each of you. It was an amazing thing to see. Absolutely amazing. I truly wish they could teach all hospitals to work that way.

MM3

Wow MM3 - I am so, SO happy for you! FINALLY you're getting the treatment you deserve and need. I am amazed that they have a pseudotumor wing - that would be heaven! I had no idea that such a thing existed!

*Please* do be cautious when considering a shunt, I know you will be, but still. Just today I talked to a NS who was FINALLY honest with me - he said shunts don't help 9 out of 10 PTC patients and there are almost always problems with them. Maybe that was an exaggeration, but he seemed truly disgusted with shunts! Not only am I still having headaches, post shunt, I'm having tons of abdominal issues as well. So I basically just gained a new problem, rather than fixing anything. It's very discouraging!

OOPS...I guess I wasn't at OSU Harding Hospital as someone in my family pointed out. Just OSU hospital. I guess OSU has several hospitals and Harding hospital is the psychiatric hospital. So I thought I better be clear on that. LOL. Crazy me.

MM3, so glad you got some decent treatment by the ER staff. I will say that although I have had some stomach pain with my VP shunt, I think I made the right decision on getting the shunt. I was in so much pain and nausea before the shunt surgery that no pain meds could help, that I was afraid that I would have done harm to myself if I didn't get the relief. I may have to deal with the pain from the tube in the abdomen, which my doctor says it is trying to reject, instead of going back to the headache pain. I've had no problems with the low pressure pain either. A few headaches last week but we believe they were normal migraines trying to start up and they didn't last long.

Good luck and keep us all informed on your progress.

Liz

Wow! That is amazing! You really were blessed to find a hospital that is knowledgable, and has a protocol for IIH!!
As for concerns regarding a shunt, I do understand those. It was not something I would even consider for many years. My neurologist is not crazy about them either, but unfortunately, with my health issues, I have reached a point where when weighing the advantages and disadvantages, the shunt won out.
What will tomorrow bring? I have no idea. But I am so thankful to have you all here, where we can talk about these things, and where there is understanding. Bless you all.