I don't know Karen (karelstx) because of being very new here but I definitely will keep her in my prayers. I feel like the great thing about this group of people is that is we are all here for is to hear what each other is going through. i hope Karen feels some comfort from everyone here. I know that since I have found this, I have felt relief that some one else really undestands what I am going through. My prayers and thoughts are with you Karen. I would definitely love to hear what you are going through and give any advice or suggestions. Take care!

Oh Karen. Think about all the wonderfully helpful things you have responded to others when they post. People want to be able to return the favor when you are in need. That is how this place works. We support each other.

Please understand that this is coming from someone who has instigated a discussion post a total of 2 times.... Poetry corner and to tell about a blog radio show. I get how you feel. It's just not in my personality to start a conversation, but I feel like I get what I need joining in. Sometimes I get what I need by reading other people's experiences. The last time I felt like starting a discussion, GBF had asked the exact same thing an hour before!

Anyway, bringing your concerns to the group helps others. The experience of "me too" is so beneficial. To you and to people who are too shy to "talk out loud." It's not complaining, especially when we are probably the only people in the world who can truly understand.

I'm so sorry to hear you are struggling. There is a great deal futility which makes the pain even harder to deal with. Please know you can share your pain as publicly or privately as you feel comfortable with, and we'll be here to understand and support you.

Take care of yourself!
Bax

Oh my goodness...Karen. First and foremost, let me say that I am so sorry that you are scared and hurting right now. But, secondly, let me remind you that you are not alone...ever. That is the purpose of this group. I hear from many of you all the time how I have helped you by something I may have said, but I cannot begin to tell you how much I have learned by the things others have said here. You included. The "complaints", "needs", "questions", etc. that people post here often times serve as a reminder of those things that we have in common. A reminder that we are not alone. A reminder that we are not crazy, or drug seekers as many of our doctors accuse us of being. That a lot of the weird symptoms we are having aren't weird after all, but rather a normal part of IIH. Here we learn from others ways to make that muscle cramp feel better, or how to deal with family members who don't understand, or how to make a Long Island Ice Tea to make the pain go away! LOL!

Karen, without you and your input, our group isn't complete. The few times you have spoken here have helped me immensely and I hate that now when you need us most you are quiet. Please know that you can lean on all of us for support and encouragement. I will be thinking of you. Your in my prayers.

MM3

Brittykae,Thank you for your prayers, and yes I do take comfort in your everyone. I know everyone here does give alot of understanding.
Bax, I am more like you, yes, I want to add to discussions then start on. I have a hard time highlighting what is going on. But like you said, yes, I can tell people that yes I know what that feels like because I have it or have had it. Your always the best in getting to what people are trying to say. Thanks.
MM3--I guess the real reason that I have been going through the scared and uncertain feelings is what has been going on is so unusual, and as a nurse I know that it is not right, and a lot of frustration mixed in there.
Frustration that I have to wear glasses, because my eyes are having problems, focus problems and they had to put prisms in my right lens to straighten my eye out, and my eyes are weaker. That is frustration.
Scared because I have had swelling and pain in my back , neck, arms and legs. Swelling in my arms causing my arms to turn blue, and blue tinge in my lips. No problem in my breathing, or in the pulses. I saw my NO the next day and he put me on a anti inflammitory and it is helping some, but I can tell if I don't use it.
That is what is going on. Take care, blessings. Karen

Jazzy, Thank you for being so sweet and always thinking of others. I know that you have your own issues, but you always take time for others. We love you, thank you. you are so special. Thank you for putting this post out for me. Take care, blessings, Karen

Hi Karen, I was wondering if the NO thinks all your swelling is from your CSF? If I remember correctly MM3 has had a swollen lower back and bad back/shoulder pain. Did he have any ideas as to why your lips turned blue? You are always so sweet and say such kind words that have lifted me up, I just wanted to do the same for you. Blessings, Jazz

Wow, Karen, that is scary. Blue lips is a very bad sign in general.

I know everyone says this, but have you written to IHRF about these symptoms? I remember reading once about them finding a connection with IIH and other nerve damage... the outside of the eye that helps to control the movement. It pulls the eye out of allignment, I guess.

But as a nurse...you know cyanosis means lack of oxygen to your arm and lips. That is baffling.

So, everyone... all over America... give Karen a big celestial hug and wonderful warm healing thoughts...then give Jazzy some too because she is always doing generous kind things like this. We are lucky to have you both!

Gosh, I am so sorry you are having such a hard time right now. That would be pretty scary for anyone but as a nurse I bet that makes it even worse. I hope you get to feeling much better soon.

Hi everyone,
I wanted to thank you all so much for what you doing for me. All your prayers are very effective, and the anti-inflammatory meds are helping, too. I am no longer blue, and my back ache is better, not completely gone. I have not gotten a hold of IHRF yet but I will tomorrow, and I will let you know what they say. I have some of the best support group here with you all and my family. Thank you all so much.
Roosmom-Thank you for you kind words I really appreciate them, more than you know. Take care.
Jazzy--and BAX----As always, you are the best girls. As to is it too much CSF, I don't know. But my NO said it had to do with the back pain and swelling and that is due to swelling so yeah it would be. Lips being blue, no but then I wonder where all the nerves are to the mouth is and if there was pressure there. Just a thought.
I am on the Naproxen 550mg twice a day at least until I see him next tuesday. I will let you know what happens then too. So two update will come your way.
Blessings Karen

Karen:

I am so relieved to hear that you are doing better!!! I was truly worried about you. Although it must've been scary to have your skin and lips turn blue, and we haven't heard of this as a symptom before, I suppose too much fluid pressure certainly could cause this kind of reaction, huh? So glad that the anti-inflammatories are working. You are such a sweet soul and I always want you participate here, both with your thoughtful advice but also and mostly when you are in need. You are never alone.

MM3

Ok everyone,
I promised that I would take my issues to IHRFoundation yesterday and I like to keep my promises so I did, and this is what they said.

The symptoms that you describe can have a number of causes and only your doctors can determine the problem. Radiating pain from the back extending into the arms and legs is not uncommon in patients with intracranial hypertension.It is not characteristic to have the blue coloration and weather issue from our awareness of published descriptions. But there is a lot unknown about this disorder.

So they are not saying that it is not due to it, and not saying it is. I will see my Doctor for follow up tomorrow, but the way I have felt better with the medicine and had a big storm a couple days later, I am positive it is all that. I will see my PCP if my NO thinks I need to or I have a flare up again, I promise I don't like it.
Thank you all for you support and caring. You are all so sweet and loving, it makes life so much better.
Blessings, Karen

Hello Karen:
First of all, I would like to inform you that you are in my prayers as well as others. I understand the fear of complaining to much especially since you are nurse, because I am one also. I have those same fears of being a complainer, but I have realized that being a part of this wonderful group has given me the opportunity to speak freely. We as healthcare providers feel that we are suppose to be the ones to take care of others and think about self last. I have come to realize that we have all the answers in the world for others and little for ourselves.
I am also having vision issues, unexplained pains, and swelling in my lower extremities. I have been afraid for a while to discuss it as well, but you give me the strength and the courage to ask questions and voice my concerns.
I am scheduled to see another NS on Wednesday, and this appointment is from another NS for a shunt. I am scared to death, but I find strength in each and everyone in this group to keep going.
I will continue to pray for you and everyone else, and I ask that you please think of me also in your prays.
I too will keep everyone posted.
Keep smiling that the one thing this awful disease can't take from us the joy of knowing that there is a God! :)

Hi Kljones,
First of all, I want to apologize it has taken me so long to answer you back, it has been a busy week and all, but I wanted to be able to really have a chance to sit down to take time to answer your post, instead of writing a couple of words on the run.
I wish we weren't in the place that we had to take strength in each other to go to the Doctor to tell them our symptoms, because we are concerned that they will only say that we are hypochroniacs, but that is were we are. I am so glad that I was able to help you in your time of need. I hope your Doctor appt went ok. I would like to have an update.
As to being a nurse, yes, it is harder, because you feel like you should be taking care of everyone else and yourself last, but sometimes it is hard even to get out of bed or out of the chair, hard to finish your on sentences. I know that it is the same with you.
I really want to thank you for your kind words and I hope that you are feeling better. And please let me know how you are doing.
Blessings, Karen

Hi karen. Sorry it has taken me this long to write back. I have been back in the er and then visiting the list of dr.'s. Please share. I know when I read these post it makes me feel normal in a way. So many people don't understand what I or we are going through. And here is like a safe haven. You are always so knowledgeable and kind. I see that your doing some what better which is great. If you like I can give you my number and you can call any time. My kids are in school during the days so I am home alone! Sometimes the devil likes to seperate us from those who care the most.

Praying for you,
Robin