A Momma Who Struggles daily and just wants her life back, just like everyone else.......

Hi my name is Nichole, i was diagnosed April 15th, 2012. And that day I feel was the day my life w taken from me. I have hope like many others I just want my life back. 

I had headaches for 2 yrs prior to my diagnoses, but we treated them as headaches. Then one day at work my vision started blackening out, it would start from the outside corners of my eyes. I had no clue what was going on I was at work when it started. It lasted for about 30 minutes and I just felt funny too. I called my dr she couldnt get me in for three weeks and said if it didn't get better or got worse to go to the ER. Well the next day I wasn't better and it got worse. I brushed a piece of hair away from my eye and felt a sharp pain. I then went to the ER and they didn't help me at all. I didn't even see the dr,mthats how much they didn't help me. I was told to go to the eye dr, so the next day I did. When my eye dr looked into my eye she said "Oh My"! She scared me. She then apologized for her unprofessional reaction just that she hadn't seen anything like it before. She knew exactly what  it was, Psuedotumor Ceribri. She told mei had to go straight to the ER and that she would call them and let them know I was on my way. I got my first spinal tap and the highest level the tube read was 56, we the fluid filled the tube and over flowed for sometime. My pressure was unreadable. For two months I was in unbearable pain and couldn't work, eat, barely even drink and walk to the bathroom. I lost 54lbs in those two months. I Had become bedridden and was in and out of hospitals. I was on Diamox 250mg 3x four times a day and we even gave Topamax a try.   Nothing seemed to be helping and They could not figure out what would work for me to be able to even bare being out of bed and trying to basic daily tasks. I had another spinal tap two months from my first one and my pressure was 54. At my eye apointments my dr took 3D pictures of my Paplideama, and boy was there alot of fluuid pressing on my optic nerves.My neurologist then sent me to an major hospital where they had teams of drs there that could hopefully help and figure out something to do with me. I was in the hospital for 3 days and had so many MRIs, MRVs, and cats cans I couldn't keep count. I was sent home with a new prescription for Diamox, 500mg 4x a day, so a total of 2000mg of diamox daily. It worked for awhile where I could bare getting along with daily things and eventually I was able to go back to work. 

I still was not my self, I felt horrible day in day out. But being that my husband was having trouble finding a job I went back to work and struggled through the pain. I kept the weight off and my drs seemed to not understand that with the weight loss and being on diamox why I wasn't best. I feel like a guinea pig to these drs. And just like many others, we know more about this illness then they do it seems and no one listens to you. While working my coworkers would talk behind my back, like it was all in my head or that I'm some pill junkie. I still worked my ass off and was greatly appreciated by my boss and my few friends I had at work. Since I seemed to be doing somewhat better my dr lowered my Diamox to 4-250mg daily. I didn't feel any better and went on with my life struggling daily trying to figure how or what I could do to get my life back. I have a beautiful 3yr old(2 at the time) and I was missing out onto much with her. I tried my hardest to be there with her as much as I could even if I was in agony. But there were times I felt like the worst mother on earth, because all her little heart understood was that Momma doesn't want to plan with me,not that I didn't feel good and that I just wanted to rest. I struggle with this everyday, and it breaks my heart. I had just opened my photography business and had won People's Choice Award at an art show.  But IH stole that from me to, I couldn't continue with my business. My husband was by my side every moment he could be, weather it was just holding me, holding my hair back while I got sick, or trying to encourage me to eat or drink. I don't know what I would do if I didn't have him. Some of my family understood, some said they understood but I know they didn't, same for my friends too. 

A little over a year after my diagnoses it was becoming to hard for me to work, I worked as the lead care giver at an assisted living facility. It was becoming unsafe for me to work and unsafe for me to continue taking care of the residents. I was heart broken that I had to leave a job and residents I loved so much. But I couldn't help it, I was getting worse. My husband also got a job after I put my two weeks in at my job. So that is a blessing.

Now he is working and my drs and I agreed that maybe not working would make me feel better. Well it didn't. I still suffer from:

Constant headaches and body pain, Sleepy, Confused, Disoriented, Weak, Stomach pain, Tingling in fingers and feet, depression, anxiety, mood swings, Memory loss, unsteady, irritable, Fatigue, body jerks, pulsing and drumming sounds in my ears constantly, whole body stiffness mostly in the am, pressure in head, eyes nose and ears54. My neurologist then sent me to an major hospital where they had teams of drs there that could hopefully help and figure out something to do with me. I was in the hospital for 3 days and had so many MRIs, MRVs, and cats cans I couldn't keep count. I was sent home with a new prescription for Diamox, 500mg 4x a day, so a total of 2000mg of diamox daily. It worked for awhile where I could bare getting along with daily things and eventually I was able to go back to work. 

I still was not my self, I felt horrible day in day out. But being that my husband was having trouble finding a job I went back to work and struggled through the pain. I kept the weight off and my drs seemed to not understand that with the weight loss and being on diamox why I wasn't best. I feel like a guinea pig to these drs. And just like many others, we know more about this illness then they do it seems and no one listens to you. While working my coworkers would talk behind my back, like it was all in my head or that I'm some pill junkie. I still worked my ass off and was greatly appreciated by my boss and my few friends I had at work. Since I seemed to be doing somewhat better my dr lowered my Diamox to 4-250mg daily. I didn't feel any better and went on with my life struggling daily trying to figure how or what I could do to get my life back. I have a beautiful 3yr old(2 at the time) and I was missing out onto much with her. I tried my hardest to be there with her as much as I could even if I was in agony. But there were times I felt like the worst mother on earth, because all her little heart understood was that Momma doesn't want to plan with me,not that I didn't feel good and that I just wanted to rest. I struggle with this everyday, and it breaks my heart. I had just opened my photography business and had won People's Choice Award at an art show.  But IH stole that from me to, I couldn't continue with my business. My husband was by my side every moment he could be, weather it was just holding me, holding my hair back while I got sick, or trying to encourage me to eat or drink. I don't know what I would do if I didn't have him. Some of my family understood, some said they understood but I know they didn't, same for my friends too. 

A little over a year after my diagnoses it was becoming to hard for me to work, I worked as the lead care giver at an assisted living facility. It was becoming unsafe for me to work and unsafe for me to continue taking care of the residents. I was heart broken that I had to leave a job and residents I loved so much. But I couldn't help it, I was getting worse. My husband also got a job after I put my two weeks in at my job. So that is a blessing.

Now he is working and my drs and I agreed that maybe not working would make me feel better. Well it didn't.

I still suffer daily these are my daily symptoms, maybe not everyday for all of them but most of them yes daily:

Constant headaches and body pain, Feeling sleepy and Insomnia,Confused, Disoriented, Weak, Stomach pain, Tingling in fingers and feet, depression, anxiety, mood swings, Memory loss, unsteady, irritable, Fatigue, body jerks, pulsing and drumming sounds in my ears constantly, whole body stiffness mostly in the am, pressure in head, eyes nose and ears, the shakes. I also have trouble with being able to eat or even getting myself to eat :/

Right now I have my neurologist saying that I need to get the shunt and my Opthamologist saying no. My primary eye dr says that i have lost my perifural vision in the bottom right side of my eye and there is some vision loss in my left eye just not as much. She also saids that the tissue in my right eye is lighter then the left and that the pressure is killing the nerves faster in my right eye then in my left for some reason. I just don't understand that somehow my Opthamologist can over rule my neurologist. I'm tired of feeling like a guenia pig to all these drs.

I am just like evyone else, I want my life back. I think that is what I am struggling daily with the most on the inside. I look at pictures from before my diagnoses or things I used to do and just cry. I feel alone, I feel that my husband really doesn't understand how I feel. I try to live above IH but as days go by I feel that it is takening more and more of me little by little. It is so difficult to take care of yourself with IH and then I am a stay at home mom with my beautiful 3yr old daughter and my husband who works hard everyday, and me having to do house chores on top of caring for myself, my baby girl and our house I feel overwhelmed. I just don't know how to juggle it all. And I never get a break from being a stay at home momma, every once in awhile I may get a nap in while my husband is home but that's it.

I'm glad to have finally find a support group that people actually partake in. I've joined a few and nobody ever partakes in the group.

One thing that I hope to here from others here is that if they are a mother of a young child who's not in school how do you manage daily things?

I know I went on and on, I tend to do that, I'm sorry. Lol I am always avaiable to talk to, I don't want anyone to feel like I have for over a year alone! :hmmm:

I forgot to mention my anout my resent spinal tap was 37. In April of this yr my eye dr said that he didn't even think I had IH. BS if I didn't! So he wanted me to go off of my Diamox for a month and the get a spinal tap. So after a month of being off Diamox, during that time I did not feel any better more sleepy if anything, so anyways I went and got the spinal tap andi was 37. At my last appointment he didn't want to listen to anything I had to say or answer any question I had about the shunt. He said this is what we are going to do and come back in two months. So he put me on diamox 400mg every 6 hrs. (I may have mentioned someon this in the original note but forgot to explain the details, opps) so I take it at 6a, 12p, 6p, and 12a. I have not felt any better the only thing I've noticed is the money missing from our very little income because I don't have health insurance. So now I sit here and take the pills as ordered and hope that October 9th gets here quick because I'm tired of being pushed around.!. So here's to hoping that by the time my appointment comes my dr has pulled his head out of his butt and will listen to me and hopefully the things my neurologist is saying who has been there with me since the beginning with me.

Oh my, Nicole :shock: !! But, first and foremost,

Your story sounds so familiar. So terribly wrong, but all too common. Your docs sound like they don't work well together. That makes such a difference. It's too bad they won't talk to each other, let alone to you.

I am concerned for you now that you don't have insurance. Will you be covered under your husband's or does he not have insurance available for the family? It certainly sounds like a lumbar or ICP bolt test should be done, where they put you in the hospital and measure your spinal fluid non stop for 3 says, gradually lowering it and seeing how you respond. It is the definitive way to determine if a shunt is the way to go. I had the test done when my docs and I were not 100% sure. It gave us the answer though and everyone felt better about me having the surgery after the test.

What is the plan of action that your neurologist wants for you? I would be more inclined to go with what he says than your ophthalmologist. Can you talk to him and see if he will help you. You have suffered so much, it is time for you to start feeling better!

Thx for your reply, it is greatly appreciated and helps me not feel so alone.

It is the worst not having insurance and having a disease. As of right now I do not qualify for state medical, I just recently re-applied. So let's hope I get approved. My husband has great insurance and it only costs him $50 amonth! Unfortunately to add a spouse it is another $550 just for me!!! :shock: I couldn't believe it. And we cannot afford that what's so ever being that he is the only one working and bringing home about $1650 a month. :(

I'm glad you told me about the IPC bolt test I haven't heard of that yet. I have an appointment october 9th and will ask about doing it and also suggest the my eye dr gets in contact with my neurologist. I know my neurologist gives him my information from when I see him but my eye dr doesn't seem to even bat an eye at what he says. It's so frustrating!

My neurologist says that I need the shunt and I agree that the Diamox is not doing the job I feel it is making me worse. He told me again to tell my eye dr that he believes I should get the shunt. He says the Diamox is not working for me as well as the other meds out there for IH.

My neurologist said that I may have an underlying illness, but he knows that I do not have insurance so he is not forcing me to get these test even though most places probably wouldn't help me because I don't have insurance.

I'm tgetting tired of struggling to get out of bed and to go through daily taks. I try my best to stay positive, and be the best Momma and wife and friend I can be. But some days, seems like more days lately, I feel.......I don't know helpless, weak, a horrible mother and wife.
I feel like I am beings a debi down, but this road that my life has lead me down this past yr has been ROUGH!!! And never seems to get any better, and that nobody REALLY understands what I'm going through, even though a few say they do.

I feel a tiny bit. More at ease now that I have joined the group, and know that there are many people out there hopefully to give me advice or just hear me rant about my horrible day.


Thank you again for your response it means alot to me! I look forward to talking with you more!

Nichole, no need to apologize here. We all understand, all too well, EXACTLY what you are going through. This disease is a real life changer for sure. It is not your imagination about how it makes us feel, either. It can be sssooooo very hard just to get out of bed in the morning, or you go through (like I am right now :roll: )
periods of not being able to sleep, somedays you fell like you can ignore the pain and others it will not be ignored!! It is so difficult to try to maintain a "normal" life when you are feeling anything but normal.
There are some really useful print outs available on the site, that can help with how to speak to your doctors as well as to speak to friends and famiy about IIH. Sometimes the printed page can do more than the spoken word can.

Since you are in Washington, I would recommend that you contact the IHRF since it is in the Portland/Seattle area and maybe they can come up with some suggestions for you as far as treatment options to do until you have insurance again.

I am curious though, why is it up to your ophthalmologist and not your neurologist as to whether or not you get a shunt? In my case it was the neuroradiologist that convinced the neurosurgeon to do it. Is the ophthal. the one that is calling the shots? Usually the big determining factor is when vision is at risk. Since you have some vision loss I would think that would get the ophthal. on board with the idea of a shunt.

I understand the limited funds situation. So glad hubby was able to get such good coverage for himself anyway. That is a great deal. And he is working now, so that will help ease some of the stresss off of you. Try to do what you can to keep healthy. Eat right, get plenty of rest, try to keep the stress down. And keep plugging away at trying to get insurance coverage, or maybe a medical facility that would be willing to work with you on discounted rates or do the shunt surgery and let you pay a few dollars a month.

Oh, and do have a good look around the sight. There have been others who have had a ICP bolt or like me, the lumbar drain test. It is interesting as well as informative and may help your docs feel better about getting you shunted, if that would work.

In the mean while, feel free to rant and rave, or giggle or just ask away. That's why we are here. .

hi Nichole;
my kids were 3 and 21 months when I crashed into this illness. it took 2.5 years to actually figure out what it was, because I don't have papilledema. so, while I had worked a few months before I crashed, because of the air force we moved and then right after that I started having bad brain fog and fatigue. plus nausea. and I lost 40 lb but I was sick as a dog stick thin. so I had my kids full time, and it is pretty hard. I remember laying on the ground and pushing my son in the swing with my foot, because I was too exhausted to sit or stand. going to walmart was horrible as I would get so dizzy and feel like I might pass out. housework was nearly impossible; I remember a rash off good days I had, by some small miracle in March of 2010 and I was so proud that I had been able to clean the kitchen floor. now my son is autistic and I have all of that to deal with too, on top of my own problems. but, he gets a lot of support, he's in 30 hrs of special ed preschool per week, plus 6 hrs of ABA therepy too. so while you would want to be the one to work with your child, I know he's getting better support than I could give him. I am so overwhelmed by any sensory stimulation that it is so hard to be around him when he is jumping and screaming etc. I do feel guilty, but at the same time I am so beaten down by this illness that I just do the best I can and hope that it's good enough. I just want my kids to know I love them, even if I can't play with them like I'd like to. at least she still has her mommy, and we can hope for a day when you will be able to do those things with her. if you are able to put her in preschool a few hours a week even, for her to get more interaction with others, that might be good for her. I am lucky because my son got into the preschool program at the same school, same time my daughter started kindergarten. now I have lots of quiet time during the day which i need desperately.

I feel your pain. Don't know exactly how long I've had this horrible condition, as I've suffered with headaches for years but was diagnosed after having severe optic nerve swelling in April 2011. The specialists referred me to a neuro-ophthalmologist in Nashville, which is nearly 4 hrs away. He started me at 1500 mg of diamox, the stuff made me feel horrible as soon as I started on it. 4 weeks later, he increased to 2000 daily & within 2 weeks I could barely hold my head up. I called him & told him what was going on & he told me to get to Vanderbilt Hospital immediately. He said he would call them & let them know what was going on & get a team started to see what could be going on with me. Well, I was at work at the time & 4 hrs away so that wasn't possible. My sister is a nurse & I trust her more than anyone (yes, even more than my husband!) so I asked her to take me. She took me that night & we went to the er 1st thing in the morning. They did a spinal tap & my pressure was over 60. I was admitted & scheduled for surgery, do not pass go, do not collect $200, no questions even asked. I was terrified. The dr they scheduled me with was booked so I had to sit in icu for 2 days before the surgery. They put a vp shunt in on Thursday & I went home on Friday. It took a few weeks to recover but I never realized how bad I had felt until I felt better.

You are a very important person!! Do not let these dr's treat you like a guinea pig!! Educate yourself & make them work WITH you to do what is best for you. We as mothers have a very important job. My boys still are hurt by my having to go to the hospital for my surgery (and a revision surgery a few months later, not to mention complications later). No one else is going to look out for us!!! Love & ((hugs)) cheer

I will definetly check out the print outs and stuff. Hopefully it will help with my eye dr. I am not sure why he is calling the shots, but at my nxt appt in October I am going to ask him why he is not listening to my neurologist who has been there with me since the beginning and ask him about that bolt test as well. I'm tired of being put on more and more diamox, I mean at my last appt he told me that I could go up to 4000mg a day of diamox, My Mouth About dropped to the floor, I feel crappy as is then add diamox which then makes it worse and now u are telling me we can up it to 4,000mg. I mean I would think it would make me feel even worse. Who knows I wish I could get a different dr there but he's the only one. :-/

I have got in contact with the research foundation, well I actually recently did still waiting for my packet. I haven't talked to anyone I didnt know there was a place you could call and talk to someone. I will definetly look into that.

I really wanted to get her in preschool but where I am at it costs $180 a month, I can't afford that, I can't afford to get all the medication I am prescribed either. I am seeing if that state will help me out with her going to preschool because I sit hear in pain and like you said there runs reaming and jumping just makes it all worse. I wish I could get her in preschool and I hope I hear back from the state soon before it gets to early into the school year, if that even matters. I know it is the best thing for her, the only other problem is no car to bring her there and back so I don't know if the preschool can pick her up and bring her back either. Its something I will have to look into when I hear if I will get assistance for her to go to preschool. And I like you could really use the quite time.

I myself am tiered of all this pill crud that isn't helping me, I want to See if the shunt would be beneficial to me just like my neurologist thinks I need it.

Wylee- for being the first to give a big warm welcome and for telling me about the print outs.

Volgirl98- You your self have been through alot I am glad to hear that the shunt was a positive thing for you.

Sophia's mom-I couldn't imagine having two little ones, you are a strong person to have managed the best you could with two little ones.

Thank you agian to everyone who is talking with me it is helping me feel not so alone in my little world here. Now on to right another post about on going ?s my husband and I discuss, which usually leaves me irritated and wonders why he even has to talk to me about IIH!