Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
So, my doctor took me off of Topamax because my hair was falling out. She wanted me to start on 250 mg. tablets of Diamox. I thought I had these at home so I didn't ask for her to write a new prescription. Well...I screwed up....what I have at home are 500 mg. tablets and they can't be split in half. As I was completely out of Topamax and it was the weekend, I had no choice but to start on the 500 mg. dose of Diamox.
How's that going you ask?.....Not well. I woke up yesterday morning with a horrible headache and had to put up a dark curtain to block out the light. Dilaudid merely took the edge off the pain. Then today the "whooshing" noise returned. I called the doctor but am still waiting for a call back. Does anyone have any suggestions?
MM3
How's that going you ask?.....Not well. I woke up yesterday morning with a horrible headache and had to put up a dark curtain to block out the light. Dilaudid merely took the edge off the pain. Then today the "whooshing" noise returned. I called the doctor but am still waiting for a call back. Does anyone have any suggestions?
MM3
I hope the doctor called you back today...did she? If not, I would call again first thing in the morning and keep bugging them until you can get that prescription called in! Feel better soon.
Hugs,
Stacy
Good luck.
Sorry to hear you are back on the D word.
I am very jealous. How did you manage to get a script for dilaudid? I could use some of that today.
TJ
I hope your Dr. call you back, can he/she can just call in your presciption so you don't have to go and pick it up?
I don't know what to suggest except keep noise and light out, but I know you have kids so don't think you can do that. I was wondering if the topamax helped at all with your headaches?
That whooshing noise almost drove me crazy, I'd keep calling your Dr. if he/she doesn't get back to you. I hope you get some relief soon, sending a tender hug, Jazzy
I hope you get to feeling better...btw I read your blog and I love your explanation of this awful disease...w/the mixture of textbook explanation and yours it was the perfect combo!
Others like icepacks... I like warm showers (not hot) and a shower chair for dizziness. It seems my HA is so much better when I'm in there.
Friday night I was having a really bad time, and I took an OTC sleep aid. It was enough to get me to sleep, and I slept all night for a change. Actually felt better in the morning. Who would have guessed?
Bax, I am also taking 20 mgs. of Lasix 2 x day with Potassium supplements. The first couple of days I wasn't taking these and that may have been why I was in so much pain??? They seem to be helping some.
TJ/Brooke: I have bottom lined it for my docs here by stating that Dilaudid is the only thing that helps me. I made myself very clear. Being that I don't take anything else and it is a "controlled" substance there is no chance of my abusing it. Any doctor that denies you using it really needs to explain his reasons why. My doctor gives me 40 tablets and a new prescription for it about every 2 months. If it works, you should have it.
The doctor still hasn't called me...so, I am still waiting for that. (Although, you know me "squeaky wheel" here has called several times.) LOL
Thanks again.
Khrystine
I guess it never hurts to ask. I'll give it a try next time my doc. I would love to have some of that as a fall back when thing get rough.
TJ
Good luck. It never hurts to ask.
My doctor and I finally touched base today, which turned out to be perfect as I was feeling a little rough. I could barely stand in the shower today. Diamox makes me really weak. Along with the "whooshing" I have also had some CSF fluid leaking out my nose again. She said she wants to go ahead and schedule the cisternogram to determine where my leak is. She also suggested either Methacetazolamide (Sp?), which is a milder drug like Diamox or Zonegran (which I think Bax is taking), it is a milder drug like Topamax...except you don't necessarily lose your hair. I'm going with the Zonegran. She also stated that she is strongly considering admitting me to the hospital for a neurosurgery drain test. I stated that I wanted to exhaust all medicinal options prior to shunt surgery. She is giving me the option, but she said things don't look good. It looks like a shunt is close on my horizon. Even if you don't pray...pray for me now.
Thanks.
MM3
If you do the drain test you dont have to get a shunt. The nice thing about the test is you will know if a shunt will work and give you the relief you are looking for. If you dont feel good during the test then a shunt isnt going to help. If your doc is considering it then I would do it as then you will know if a shunt will work. Then you can later decide to have the shunt at any time or not.
TJ
ps I love the way you spell your name
Khrystine - I believe I also have csf leaking from my nose. Will tell my doc about it next week. She's on vacation at the moment.
Thanks,
T
Thanks for your input. I am a little confused however...when they did your drain test...weren't your pressure numbers always relatively low? And didn't you have pain? But, they did the shunt surgery anyhow. Can you explain how that works. I guess I'm just afraid that they'll do the same with me. Or, maybe that is how it is supposed to work?
Jazzy: Thanks for your continual support. I miss hearing from you. Thanks for the name compliment....it was originally spelled Kristine...but, when I went to Performing Arts School in High School I changed the spelling because I saw an actress who spelled her name that way. I thought if I ever became a famous singer I would be like Madonna and just use my first name so I had the spelling legally changed. LOL! (BTW...still not famous!)
T: TJ can probably describe a drain test better than I can, since he's experienced it. Just looks painful to me. I know people get tired of hearing it...but, a good place to go if you have CSF Rhinorrhea is OSU. They have fantastic specialists there who know how to treat this disorder. Good luck.
JP: If there was an easy answer for what works to treat the pain and suffering that comes with IIH, a cure would have been found and there would be no need for this group. Unfortunately...a cure has not been found. The same treatments used today were used 100 years ago. We don't have a celebrity sick with the disease raising awareness and money...pharmaceutical companies consider this a rare disease and therefore would rather spend their time and money trying to find ways to treat Parkinsons and Cancer....and the medications we have available to us are actually created to treat other illnesses like glaucoma, seizures and high blood pressure NOT IIH, therefore we suffer the terrible side effects....the shunts have a checkered success history with about a 50% success rate, many of these shunts have complications, become clogged and therefore require additional revisional surgeries. Part of the reason why this is so complicated is because doctors don't yet know exactly what causes it. They don't understand why children, men and women get it...but mostly women. They don't know why some of us are skinny and some are overweight. It would seem that we are all affected in different ways. This disease is complicated in many, many ways and therefore treatment is complicated as well. Some of us will have success with medication alone...but, you may need to try many different medications in order to reach that point of success. Others will try medications...only to find that a shunt is their last hope. Some will have success with shunts and some may have just added on one more complication. I am frustrated, you are frustrated...we are all frustrated, angry and depressed. But, the way I look at it is I can either lay in bed angry and depressed and do nothing or be proactive in my care, work to help others who are suffering also by listening and giving sound advice, and lastly to work on starting a fundraiser and raising awareness to bring about change that will make a difference for us all. I know this is not the answer you are looking for. We have all been through our share of anger and frustration too. Just hang in there. I don't know how long you have had PTC or when you were diagnosed. I don't know whether or not Diamox will be the miracle drug for you. But, I can tell you that if you are looking for support from people who know EXACTLY what you are going through than you have come to the right place. I welcome you to the group, with sadness that this illness has claimed another victim. But, I hope to hear from you more so that we may be able to help you with advice and support when you need it.
MM3