Hi everyone, My name is LaDonna, In 2002 I was having pretty severe headaches, went to the Dr. and he sent me for a cat scan, when the results came back he told me that it showed I had frontal lobe atrophy, sent me for an MRI which confirmed the cat scan. I was then sent to a neurologist and after numerous tests, I was told I had ahlzeimers. I was treated for that for 2 years but all the medications that they put me on only increased the headache pain and when I told the doctor he wasn't listening to me. I went back to my primary and told him what was going on and described to him my symptoms, he sent me to an opthamologist where it was confirmed I had papidillia (not spelled right). I was them sent to another neurologist and had to go have a lumbar punch, which confirmed the pressure in my head was extremely high. I was then told I had IH. I had to go every 2 to 3 months and have a lumbar punch done to drain the fluid. My neurologist said he would not send me to have a shunt put in unless all else failed. He put me on Diamox and then Topamax and had allergic reaction to both, so then was put on 80 mg of lasix a day. I was told in 2002 to apply for disability and told i would never work again, I was lucky and got it. In 2005 we were having severe financial problems and after having a lumbar punch, talked to my medicare supplemental provider asked if I could cancel my supplemental insurance for 3 month until I need another punch and he told me no problem, that when I was ready to call and they would reinstate me. Big mistake!!!
When I called them back, I was told it was pre-existing and they could no longer cover me. I have not had any treatment at all since then except for the continuance of lasix and hydrocodone for pain as I can't get a neurologist or opthamologist to see or treat me with just medicare. I fear that this disease is going to kill me as I suffer from vision loss, hearing loss, memory loss, severe headaches, neck and back pain, horrible swishing and pounding in my ears. My eyes water like open faucets constantly, and to take the lasix daily I have reoccuring UTI 's, I continue to gain weight, and was told by medicare that I won't be eligable for open enrollment for supplemental insurance again until I am 65 and I will be 51 in April.
I am told by most that I seem to be fine as I have had to learn to live with the pain, but no one really knows what I am going through. My faith in God is the only thing that keeps me going.
My life is a mess, but I read your storys and I know that I am not alone.

Ladonna , my heart goes out to you, and reading your story both amazed me, and I can't believe you are expected to live like this! How can your medicare provider advise you to cancel for 3 months and not explain to you that there could be repercussions. I would go through the paperwork you were intitially given, and see if they are legally at fault and accountable for misleading you. I'm not sure how it works in America, but I will try and see if I can fijnd anything that will help you, and hopefully other members who are from the USA, might be able to offer some advise and suggestions that will be a great help.

While this condition isn't life threatening, you are right to be concerned about your eyesight, hearing and memory. As for living with pain, no one should be expected to do that, and by advising you to do so is not just unrealistic,and unacceptable, but is also ridiculous! :Angry:

As your eyes are sensitive now, which is why they are constantly watering, it might help if you wear sunglasses. ,At home you can soften the light in rooms by using low wattage bulbs, and/or have a dimmer switch. If you have lamps in your room, pick your lampshade carefully, so that it doesn't amplify the light, and position it where it doesn't shine directly in your face. You could also invest in some night vision glasses.

To help with the headaches, try a warm cloth on your head and neck and a hot water bottle for your back, as this can soothe it somewhat. Although, we can't advise you on what pain medication to take, it might be an idea to ask your pharmacist, describe your headache to him and that you have IIIH, and ask him what over the counter medication you could take to help the pain. If you are on any other medication make sure you tell him which ones so that he knows which ones will be suitable to take with them.

Hopefully these suggestions will be a help in the time between getting to have treatment. You are NOT alone, and we are here to help you, support you but most of all to listen to you. We will do our best to help you, and hopefully members reading this will have some ideas about your medicare, especially if they had a similar experience.

Things will get better LaDonna, and you will get your life back!

Thank you Heidi, for the support and the information. I did seek an attorney as my insurance agent that my auto insurance is through told me that they are obligated to give me that information, but the attorney told me that it basically would be my word against theirs, and I would most likely just run up a huge legal bill and still possibly lose the case, and I didn't have the money to pay for an attorney as we were already financially hurting as when I went on disability I lost earnings of approx 20,000.00 a year. My primary Dr. is doing what he can for me which is basically keeping me on the lasix and hydrocodone but without a neurologist there isn't much else he can medically do. I will take your advice and hopefully it will help ease things. It is hard for me and I am :Angry: , but my faith gets me through each day, and I try to live one day at a time. Thanks again for the advice and kind words. God Bless and have a great day!!