So, it's been a while since I've posted...I'm a little overdue...

I'm back at school, which I love...but my body has decided to revolt against me actually getting anything done, which isn't good. Let me rewind and explain a little...

September 5th - All was well. In fact, it was amazing! I'm a philosophy major...and a Thomas Aquinas junkie! This was the day of the philosophy department's annual Aquinas lecture (the religious studies department has one in the spring). One of my professors, who is the Thomas Aquinas chair in philosophy, invited me, along with a couple other students and another professor, to have lunch with the lecturer (who had just come in from Scotland...I'm in Indiana, USA, just in case you didn't know). We sat down to a wonderful lunch off campus around 11:30am. We were back on campus by 1pm, because several of us had another philosophy course at that time. However, by 1:30, my head was EXPLODING and my nausea was beyond intense. I ended up skipping my next two classes, going back to my room, taking everything I could (including DHE, Zofran, Cyproheptadine, and Aleve) and lying down for about 1.5 hours. When I woke up, I thought I had actually gotten the headache under control. I went to work for about an hour, and then off to the Aquinas dinner and lecture, which started at 5. I was talking to people at the lecture until about 11:30pm. When I got back to my room, the minute I started to relax the tiniest bit, I started throwing up...for several hours.

This was the second time EVER that I was actually throwing up with a headache. And it happened every night for 2 weeks, until I managed to get enough Zofran into me to calm it down. However, that same day, 2 weeks later, I came down with one VERY nasty cold, which lasted about a week. Then, the day my cold let up, I started with the throwing up again.

To add onto all of this, on October 2nd, I was just sitting in a chair, waiting for class to start, when I got a sharp pain from my lower back into my right hip. I didn't think much of it at the time. Got through class and a meeting, went to my room and took some Aleve, biked over to Notre Dame, had dinner, went to Four:7 (a Catholic fellowship I'm on leadership team for and play in a worship band at), biked back to campus, and went to bed. The next day, I woke up in severe pain. I somehow managed to get through the day, but came back to my room and collapsed into bed. Then, Thursday, October 4th, I woke up in excruciating pain, almost unable to walk. I missed my 8am and my 9:30am classes, but managed to make it to work at 11. However, by 12:30, I was pretty much crying because I hurt so much. My boss saw me (and VERY long story short) ended up taking me to the ER where I was diagnosed with sciatica and put on bed rest for 3.5 days. Well, other than getting very behind in my school work during that time, nothing much happened while I was on bed rest. But I was still very nauseated from my headache.

Well, finally, I made it to Fall Break. Over break, I saw my primary care physician and discovered that my pelvis was out of alignment, which is why I was dealing with the sciatica. She put my pelvis back into alignment and put me on some steroids. The next day, I saw my migraine doctor to get my 4th (and probably last) set of Botox injections. He said that if these don't make a significant difference that we are moving onto something else.

I came back to school a week ago, and things seemed to be going well. But then Tuesday I started with the flu. Wednesday, my sciatica started acting up again (I had finished the steroids Tuesday morning), and Wednesday night, over a 2 hour period, my head went from a 10 on the pain scale to about a 16. I've done everything I can think of to make the make go away (or at least ease) but nothing has helped at all. It's now Friday afternoon and I don't know what to do to get through the weekend.

I'm behind in every class I'm in (I'm taking 6 this semester, because I'm insane), my back hurts, and, most importantly, my head is killing me. My vision keeps blurring/doubling and the nausea is crazy. Oh, and I didn't mention earlier, but I haven't taken any daily meds since September 5th, because every time I try to take them, I just throw them back up. I'm miserable and I don't know what to do. Frankly, I'm 99% sure that a spinal tap is in order, but I don't know if the ER will do one for me, and I don't have any doctors here in town (the joys of going to school 6.5 hours away from your doctors...urg). My parents have no suggestions for me (and they probably just want me to shut up about it all already). My boss is truly concerned, but I doubt she can do anything either.

I just want to curl up and die...the pain is too much. HELP!!

Peace,
~Heather~

hi Heather;
I'm so sorry you are so miserable! yes, you definitely need a spinal tap. have you already been diagnosed with IIH? your nausea and visual blurring are the major key that you need to get on this. I would call your neurologist or primary care and have them call the ER you are going to to prep them on your condition and notify them of what ought to be done. you have to address the vision issue ASAP. a tap should drop your ICP enough that you can keep your other meds down. were you on something to lower your ICP before? you may want to have an ophthalmologist examine your eyes before the tap, to assess for papilledema, if you have not been previously diagnosed with it. just remember, if it's not there, it doesn't mean you don't have IIH.
FYI I have had sciatica also and think it must be related to my IIH.
please take care of yourself. if you have to, have a family member just come and get you and take you home, or to the ER. you are really too sick to be going to your classes like this. you have to get a handle on this immediately or you will end up having to take a leave of absence for the semester. I am also concerned about you driving 6.5 hrs home in your condition.
Deb

Deb,

Yes, I was diagnosed in June 2011, though my headache specialist doesn't think I really have it because my pressures are only borderline. However, every spinal tap I've ever had, when they draw off the fluid, it's like a miracle...almost instant relief. Starting in June 2011, I was put on 1000mg of acetazolamide (Diamox) twice daily. I know that not having had that in over a month and a half HAS to have elevated my CSF pressure.

As for classes, I have to go. I've already taken a 3.5 year medical leave for other reasons and, after this semester, I only have 3 semesters left until I graduate. If I were to take another medical leave, I would never be able to finish school...plus, I'd be stuck with a huge amount of student loan debt and no degree, which means I would have no way to get a job, and thus no way to pay off the student loan debt.

As for driving home, I don't drive home from school...I don't have a car.

I agree though, I need to do something about this. I just, I don't want to burden anyone to take me to the ER, and I don't have enough money to get an ambulance. I'm just in a lose-lose situation. :(

Peace,
~Heather~

Hi Heather, so sorry to hear abut the reemergence of the IIH issues. And yes, by not taking the Diamox, you can pretty much bet that your pressure has gone up even more. Chances are, your pressure is not borderline any more. My pressures have always been between 22 and 24 cm of water, but it appears that my "normal" is closer to 8 or 9 cm. My shunt has an adjustable valve and my last actual lp was 12.5 before we adjusted and it's been adjusted twice since. So, for these docs to tell us our pressures aren't high enough to be IIH, they are not thinking outside the box and definitely not about our particular needs.
I would suggest that you contact your docs at home and see if there is a particular colleague near school they can refer you to. It is always easier to convince another doctor to do something if they already have a relationship. If not, you may have to get your actual records so they can see what your docs have already done and made the diagnosis of IIH. Once you get that lp and back onto the Diamox, you should be able to get back to your studies and work. At least it should go tyhat way. But I would also see an Ophthalmologist, as Deb suggested. Get your eyes checked. If you do have papilledema, that would help support the IIH diagnosis and need for a lp.

Keeping ,

Dear Heather;
do you have enough money to get a taxi? you have to go to the ER, or somewhere, for medical attention. this would be the time to ask for help. why can't you go to your student health center and see if they can arrange for someone to take you? I can't imagine they don't have a system in place for that. an ambulance may not be indicated in this situation, so your insurance might not pay for it. are you in a dorm? aren't there students there who are designated to help you if there is a problem, I think they were called RAs or something. maybe even campus security could help you arrange something. if you have the diagnosis of IIH and go in describing your symptoms, with the vomiting and all that, I can't imagine you won't be able to get them to do an LP. although, I've seen a lot of really stupid things done in ERs so you never know. but if you have the ER doc call your doc, things should go better.
please go and take care of yourself, please ask for help.
Deb

I've had numerous eye exams in the past and I've never shown signs of papilledema...not saying that that can't change, just that it's never been there in the past.

The health center at my school is horrible. They refuse to do anything that actually helps. Plus, they are only open from 8:30am-5pm Monday through Friday. Security isn't allow to take me to the ER this year because we thought over the summer that I MIGHT have a seizure disorder (which I DON'T!!!), and the health center has told Security that they aren't to transport me to the ER because it would be dangerous for everyone if I had a seizure in the car on the way (again, I DON'T have seizures...also, Security is still allowed to take me to my therapy appointments...really, it just doesn't make any sense at all). Cabs in town are outrageously expensive and not very prompt, so that is really out of the question. I am in a dorm, and there are RAs, but I'm not sure what they can do to help. They are told how to handle an emergency, like someone lying on the floor bleeding profusely.

In addition, I've already missed a LOT of class and such, and I'm really behind, so I don't really have time to go to the ER. At this point (late on a Saturday), even if I did go to the ER, I would be there for hours just waiting to be seen.

*sigh*

Peace,
~Heather~

I hate to say this but it kind of sounds like you are just making excuses for why you won't do what needs to be done. you are in a tough boat but you are not in a 3rd world country and there IS medical care and transportation available (even if it's not preferable) and I know you can't be completely destitute since you are in college. like, you're not homeless. DON'T take this the wrong way, I'm not coming down on you at all. I completely understand what happens to one's emotions and attitude and motivation when your ICP goes up. I get extremely negative and agitated and just think about death all the time. really not logical. so I am worried you are in a negative spiral and you need to get out of it somehow.

you DO have the Diamox, or something to lower your pressure, you just can't keep it down? what I'm wondering, is if you can crush it up (easy to do between 2 spoons, I do it for my son), and put the powder fragments under your tongue. I don't know what it will taste like, but if you can absorb it sublingually, then you can get it in your system and maybe get your pressure down enough to stop vomiting and get a handle on your symptoms. even if you mixed it in honey or applesauce after crushing it and swallowed it, you would probably absorb it faster and maybe keep it in your system before you threw up.

you have to do something, sweetie.
Deb

Hi Heather,
My 25 year old daughter was diagnosed with IIH earlier this year. Like you, she had to take time off from school. When she returns,she is planning to combine her studies with some online courses. I don't know if that is an option, but it is less tiring for her and she can set her pace at home. You should be able to talk to your school counselor about disabilty- special rules then apply. You would be covered under the Americans with Disabilites Act. They then have to make appropriaite "accomadations" - by law. The school can then extend your time to get your assignments in, give you longer to complete the course, etc. But you do have to ask for it specifically for it. They won't automatically offer it. You can get more information online about the Act and your rights under the Act.

As far as the ER - please don't delay. If you don't have your health, you won't have anything else.
Like you, my daughter is very stoic and tries to avoid the ER. Part of the reason she wants to avoid the ER, is that it sometimes is hard to convince the doctors what needs to be done. Together we learned to use words that would get the doctors attention. We specifically say, "I have a disease called intercranial hypertension. Right now I have increased pressure on my brain. I am having symptoms this is getting worse - nause and vomiting, blurred vision, severe headaches..." We save the "headaches" for last because as soon as they hear "headache" they think migraine - and you are no longer a "priority" patient. The words "increased intracranial pressure" and "I am getting worse" should get the triage nurses attention to move you to the front of the line as a medical emergency.

It helps to have someone with you to act as your advocate. Once you are sick, it is very hard to speak up assertively about your needs. I have become that advocate for my daughter. I hope you can find someone who you can trust to be your advocate.

As someone stated earlier, having your family doctor call the ER to let them know you are coming, often helps also.

My daughter delayed going to the ER many times until she realized she just kept getting sicker and sicker. For her the Diamox never worked to reduce her pressure. So you may need an LP even on Diamox.

If the reason they are not transporting you is because of "seizures" and you do not have them, get a letter from your doctor stating you do not have seizures. It seems to me, they would have to treat you fairly then.

Don't get discouraged, put yourself first! You are the only one that can take care of you, you deserve to feel better and get the appropriate medical care.

Good luck,
Sarah's Mom

Dear Sarah's mom;
I think both Heather and I wish we had a mom like you. you are awesome.
Deb

Lol. Thanks.

Called my doctor from back home a little while ago. I'm waiting to hear back from him. I don't know what he's going to suggest, but I need to do something. I'm sitting in a dark, quiet room right now. My head feels like it's exploding times a million. Everything is blurry. I'm super nauseated (though I'm managing to keep down the anti-nausea medicine...though all that means is that I'm not physically throwing up at the moment...the nausea is still horrible). There is a clock in the hallway outside my room and the ticking is driving me insane...could it be any louder?! I have to do something, and it has to happen today.

Hope you are doing better....

Please go out in the hallway and beg someone to take you to the ER. there must be someone there with a car. I am hoping that you already did this today.

btw noise drives me insane also. I carry earplugs with me wherever I go.

Doctor called back yesterday, and I ended up going to the ER. Waited 4 hours to actually be taken back. They tried medication, first, but the meds they gave me did nothing, so they decided to do a spinal tap. The ER doctor tried 6 times to get the needle in before finally calling the anesthesiologist, who got it in on his first attempt. They drained 12 cc's of fluid. My head is feeling better and I can see again, but my back is killing me. I have a 3 inch bruise on my back down my spine, and you can see each place where they stuck the needle in. Been resting for most of the time I've been back, with the exception of going to work for an hour and getting something to eat after that. Now onto trying to get caught up...and praying that the relief lasts more than a day or two!

Wonderful news, Heather. Now be sure to take the Diamox, every 12 hours, tohelp keep the pressure down longer.
Try using ice packs on your back to reduce soreness and swelling.
Hope the relief is long lasting..

I'm so glad to hear you went to the ER! I was worried about you. New piece of information to take with you now if you ever have to go again - tell them right up front if they need to do a spinal tap that it is very hard to do a spinal tap on you, and they need to ask an anesthesiologist. No one should have to go through 6 sticks!

I hope you are feeling better!

I'm so glad you are feeling better! yes, get the Diamox in you now while you can tolerate it and keep that ICP down. I am so glad you finally went to ER. how did you end up getting there?
good luck getting caught up! it must be such a relief to be feeling better.

So, my back is still hurting from the spinal tap (though, after they stuck me 7 times, I was expecting that), but other than that, for the first time since September 5th, I feel a LOT better!! My headache is not gone, but manageable at about a 5/10 on the pain scale and I have energy!! Now, to catch up on homework and I'll be good to go!!

Headache is starting to come back...and I've been exhausted for the past couple of days...like, falling asleep standing up exhausted. But I'm trying to get through...

Got bad news the other day, though...

One of my professors wants me to withdraw from his course. If I withdraw from the course, though, I'll lose my federal aid. If I lose my federal aid, the chances of me coming back to school are slim to none. If I don't come back to school, though, I won't be able to get a job that pays enough to pay off my student loans. I feel like I'm in a lose-lose situation.



Peace,
~Heather~

oh no. I would talk frankly with that professor about your situation, and about how hard you are trying to keep going despite your illness. he has got to understand.

The Americans with Disabilities Act covers students also. It covers more people and diseases than people are aware of. Please discuss your illness with your school advisor under the ADA. They have to make appropriate accomodations then. The accomodations can included having an extended length of time to get your assignments turned in, or an extension of the time to complete the course. Please check into this asap - prior to withdrawing from the course! Let me know how it works out!

Good luck!

that's a fantastic idea, yes! invoke the ADA. tell them they are not permitted to discriminate against you because of your illness, BY LAW.

I've been researching it...I'm just hoping that it's not too late...like, I already have accommodations for testing and such, but now that it's halfway through the semester, I'm worried that they will say "well, if you had asked for it at the beginning of the semester, then we could have worked with you, but it's too late now..." type of thing...but I'm looking into it...

I'm also wondering if I can use the ADA for financial aid. I mean, I understand that they don't want to pay for people to be in school indefinitely, but I have a set graduation date...and the reason it's taking me longer is because of my illnesses. Any ideas?

Peace,
~Heather~

I hate that spinal taps barely last a week...headache is getting worse again...*sigh*

Seriously want a better option...

Any advice?

Peace,
~Heather~

Sorry Heather, I can't remember how they're treating your IIH. If they're using meds, you may need an adjustment. If they're not working, then you may want to look into the surgical options: stents, sheathing, shunts, etc. It seems like they're always changing and updating things, so you still have options.

How are things going w/ ADA and school?

I've been on acetazolamide, 1000mg twice a day. But really, it's not doing much, if anything. In the past year and a half, I've had 5 spinal taps...this last one, they removed the most (12 CC's of fluid). I also don't have anything for pain management. It's really hard to deal with this day in and day out. I, by myself, have thought about surgical options…but the problem is that my doctor still thinks this is just migraines…I mean, I’m technically dual diagnosed with chronic migraines and IIH…but it’s like, he never checks the IIH…and I’m not supposed to see him until January. And when I saw the neurologist about it, she thought that the IIH was under control. I don’t know anymore.

As far as the ADA and school is going, well, since the weekend just ended, nothing really got done about it. I just spoke to our disabilities specialist here at the school, though, and it doesn't appear as if she’s going to be much help. She’s like “Well, talk to your professor and try to set up an appointment with the dean of academic affairs to talk to her about what is going on.” I just don’t know anymore.

Headache is worse today than yesterday…actually, it had me up for quite a while last night. I just feel so screwed right now.

Peace,
~Heather~

have you tried Lasix? it really helps me. and I have seen data about Lasix and Diamox working together synergistically. maybe you can ask your neuro to call it in for you to try?

I have not tried Lasix...I can ask about it...though I don't know if it may interact with other medications I'm on...freaking page and a half of medications...*sigh*

Peace,
~Heather~

So, I have emailed my professor to ask him if we can talk after my class tomorrow (which isn't until late in the day...class is from 3:30-4:45), so I'm hoping that goes well. I've also emailed the dean of academic affairs to see if she and I can meet sometime later this week.

Headache got really bad today...got through 2 hours of work and almost 2 hours of studying when I decided to get lunch because I thought getting some food would help the headache ease some...on my way from the dining hall to my room (where I needed to pick up a book before heading to class) my dad called. I got back to my room, sat down on my bed, and immediately said to my dad "I have to go...call you later!" and hung up...ran to the bathroom and got sick...I know it was from the headache because I'm not sick, like flu-sick, or anything. I gave myself an injection of DHE, called my dad back to let him know what had happened, emailed my professors to let them know I wouldn't be in class, and laid down for about an hour and a half. When I got up, I felt a little better, but the pain is still about an 8/10.

The rest of the day has been spent at a therapy session with the therapist here in town followed by dinner with friends. Then I came back to my room, had a conversation with another friend, and I've been relaxing for a little bit. I'm currently listening to Christmas music (my Christmas season extends from Halloween until my birthday (March 2) - so a solid 4 months!!) and I just finished a very brief but VERY helpful (emotionally, at least) texting conversation with my therapist from back home.

Now, on to finishing a paper, completing a take home exam, doing accounting homework, and reading for management class...

I can do this...I refuse to give up...I know sometimes it seems like I'm giving up, but I'm too stubborn to really give up. I want my college degree, and ultimately a successful life, too much!!!

Just asking for good thoughts for the rest of tonight and my up-coming meetings with my professor and the dean of academic affairs.

Peace,
~Heather~

Sending you healing thoughts and loads of strength.