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 Penny awaiting confirmed IIH diagnosis

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Peppermintpie76
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PostSubject: Penny awaiting confirmed IIH diagnosis   Wed Jul 11, 2012 11:40 pm

Hello everyone,
I have just found and joined this foundations recently.
So to introduce myself, My name is Penny and I live in the States. I am a 35 yrs old and have been very heathy all my life in the last 13 yrs I have gained quite a bit of weight...So this past February my husband and I joined the gym and changed our diet. Everything was going good . I had lost over 18 lbs, until one day back on April 14, 2012.
This begins my story of IIIH. I was at work on a Friday, it was a very busy day and had been a long week. Thankfully it was after lunch and I was in the home stretch couple more hours and it was the weekend. The first thing that I noticed was tingling on my lip like I was getting a cold sore,and I was having a hard time thinking correclty. On Saturday I had woken up with a huge cold soar on my lip. My first thought is great I am getting a cold. That night Hubby and I went out to Play Bingo with friends, during Bingo I started getting a headache, and being a normal mother and wife dug through the medicine cabinet (aka the purse) for some ibuprofen. Evening came and went my headache didnt't
Sunday whole family went to the in-laws to help with some spring clean-up and have a bbq. Still had headache and was feeling very tired and nauseous. We went home and at 2pm I went and laid down and at 8pm husband woke me up asking if I was ok and did I want anything to eat. I ate sometinhg and back to bed soon after. Monday morning woke up to get ready for work and I couldn't go I felt worse headache was worse everything was worse, and this kept going day after day. On Wednesday morning April 18th I finally decide to call primary drs and get appt. Had appt- she really didn't tell me what was wrong with me she put me on an anti-viral, antibiotic, and some pain medicine. She scheduled follow-up for Saturday April 21st with a fellow dr because she was going on vacation.Took all medcine no relief I didnt feel better I was starting to feel even worse. When I saw dr he was worried about meningitis and sent across street to hospital. Got in room rather quickly they asked all types of questions. Sent me for Cat Scan....clean, did blood work.....clean...did lumbar puncture.....clean (I guess at the emergency room hospital doing an opening pressure is not something they do as a standard). Wish they would have might have save me alot of grief. But anyway, finally they gave me morphine...nurse left room and came back 10 mins later asked how I was feeling. At this point I cant handle lights, noises. I asked if she gave me morphine because nothing changed. she said yes and gave me a little more. They wanted to admit me I wanted to go home..I do not particulary like hospitals. Finally after being there 8 hrs, they let me go home with new meds for pain didn't work. Sunday I woke up the same went grocery shopping with hubby to get out of house I had stayed out of work at that time for a week. Get home with messages on my voicemail, from my primary dr go back to hospital they now think it is encephalitis. Went back after seeing another dr they ruled out encph. But they admitted me to do more testing, they also started leaning towards migraines... explained my symptoms to umpteen millions drs finally had an MRI with an MRV.....both clean took neurologyist day and a half before they came in and told me... First night there the gave meds they normally use to get rid of migraine didn't work....went through so many types of meds I forgot all the names... I went through 3 IVS in 4 days finally the last one was a mid-line so they wouldnt have to redo IV every 24hrs. I had an allergic reaction to something or just having so many drugs in my system in a short period of time. I swelled up like a balloon and started having heart palpatations. The neurologist was useless she said they did all the tests and everything came back normal so I should be thankful I didn't have any of the nasty diseases. On the last day there she started asking me if I was under alot of stress and maybe I should see someone to help me...I was so pissed off here I am having a headache so bad it feels like the top of my head is going to pop off and she says I need to see a pyschiatrist. Finally that night another dr gave me a cocktail of narcotics it took away the pain of the headache but not the pressure. I asked to go home..and I did. So to bring you up to where I am now..I have seen a new neurologist who didn't have all the test results back in June from all the testing so when I went to see her on July 2 she had all the results and asked some questions....finally she tells me I need to have another LP because she is pretty sure with all the symptoms I have it sounds like IIH......So finally someone has an answer after go to the drs twice a week for 10 weeks. Unfortunately, she couldn't schedule the LP right away so I have been waiting, not so patiently until this friday the 13th, to confirm the diagnosis. I was put on Dyazide in June by my primary because of my blood pressure being higher recently..Neurologist called them to change to Lasix...been on it for 5 days now. I am of Friday but then again I am looking forward to having some answers so I can work out how to live with this. I would rather know than not know.....I am just glad to be able to put a name to it instead of my friends saying .....you still have a headache...and I have to tell them no I still have the same headache from April 14th.
Sorry this was so long winded I appreciate being able to chat with other people who know what I am going through and don't think I am crazy...I have not be able to work since this started and am unsure of my future ability, but am looking forward to seeing what I can and can't do

Thanks again,
Penny
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medmisfit
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PostSubject: Re: Penny awaiting confirmed IIH diagnosis   Thu Jul 12, 2012 3:53 am

Hi Penny, welcome to the group! It sounds like you've been through quite an ordeal, but at least you seem to be in good hands now. Diagnosis & treatment can be so difficult..we've all been through it & completely understand. Good luck with LP this week..hopefully you'll get some relief once they drain your fluid. Let us know how it all turns out.

Take care,
Julie
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Sophiasmom
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PostSubject: Re: Penny awaiting confirmed IIH diagnosis   Thu Jul 12, 2012 6:16 am

Dear Penny;
I am not sure why they have you on Lasix prior to your LP if they have not established the diagnosis yet. They told me NO DIURETICS for a week prior to the LP. you don't want your pressure falsely lowered and then have a bear of a time getting a repeat because they think they have ruled out IIH!
if I were you I would hold the Lasix in the morning and call your neuro to check.
Deb
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BananasMom
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PostSubject: Re: Penny awaiting confirmed IIH diagnosis   Thu Jul 12, 2012 2:32 pm

Hi Penny! Smile Welcome to the group. I'm so glad that you've found us, and hope that you'll find lots of good info and support here. I know I have!

It sounds like you've been through a really scary and frustrating time since your symptoms started. I'm glad to hear that you are being very proactive in finding the right doctor and getting your diagnosis confimed. I know they didn't get your opening pressure, but I was curious to know if you felt any relief from your headache after having the first lumbar puncture? That's sometimes a good indicator.

Keep us posted on how you are doing! *hugs*
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PostSubject: Re: Penny awaiting confirmed IIH diagnosis   Thu Jul 12, 2012 4:41 pm

Hi Penny and a warm welcome to our group, I am so glad you found and joined us. You've been through such a lot to get answers and yet you are not much further. hug I do hope that when they do your next LP, your IIH will be confirmed and you are put on an effective treatment plan. I know how frustrating this is for you, and sadly we all have seemed to have the same terrible drawn out time to getting a diagnosis.

You're in good company here, and please never apologise for having your say, we encourage everyone to have a voice here, and to even have a much needed rant from time to time. We're hear to listen, so to speak, it doesn't matter how long or short your post it, as long as you've been able to say what you need to.

Please keep us updated on how you get on.

Heidi
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bonbon
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PostSubject: Re: Penny awaiting confirmed IIH diagnosis   Thu Jul 12, 2012 6:47 pm

Hey Penny,

You and me seem to be in the same boat hun. I too am waiting for a lp - hopefully it will be happening next week. I was told that I had iih(by my neurologist - who now says he never said that to me) but i too was admitted to hospital and no-one knew what they were doing, and told me it was a tension headache from my stressful job, sofinally they have opted for a lp to be done. Good luck and I hope all goes ok

Bonnie
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Wylee
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PostSubject: Re: Penny awaiting confirmed IIH diagnosis   Sat Jul 14, 2012 1:14 am

Hi Penny, and a warm Welcome

Hope all went well today.
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