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 Heather - diagnosed June 2011

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PostSubject: Heather - diagnosed June 2011   Wed Jun 08, 2011 2:29 pm

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Hi everyone. My name is Heather and I'm 24. I have had migraines since I was a high school sophomore (so about age 15). The migraines were really bad and, after trying everything they could, my pcp referred me to a headache specialist. My migraine doctor (as he is known in our household) is wonderful. We made a ton of progress and he also got me off of a lot of meds that weren't doing anything but causing more problems. However, back in November 2010, I started with a migraine that just would not go away. We tried a TON of medications and a nerve block, but even that didn't help my pain. He admitted me to the hospital to try another drug and when that drug didn't touch the pain, he had me get a spinal tap. That first spinal tap was like receiving a miracle! It didn't take away all the pain, but it made it so that I could function again. At the time, my migraine doctor told me that I was borderline BIH (or IIH), but didn't confirm it. Over the past couple of weeks, my migraine has gotten so severe that it takes all the energy I have to move from my bedroom to the couch, where I spend most of my day in pain and trying to sleep it away. Last week was horrendous for me as I was starting all over with the attempt to get the migraine under control using medications. However, after all the pills and the 8-hour ER visit, my migraine still won't budge. I saw my doctor yesterday and he is changing 2 of my medications. He asked me if I had any questions and so I asked him about another spinal tap. He looked up at me and said, "I think that is a great idea!" So, I have another spinal tap scheduled for this Friday. We shall see how it goes. At the very least, I want my migraine to become more manageable (where I can be a productive member of society). However, most of me really wants the pressure reading to be high so that we can decide if I do in fact have IIH. If I do have IIH, I know that I do not want to have to keep getting spinal taps every 6 months or so. I would rather have a shunt put in. Heck, even if I don't have IIH (Which, at this point, I'm pretty sure that I do), I don't want to keep getting spinal taps to relieve my migraine, so I still might ask for a shunt. This one migraine that I'm talking about, by the way, is on day 216. So now that I have rambled on about how I feel that my life is a living nightmare...

Thank you for having a place where I can find help and ask questions of those who have experienced this condition before me.
Peace,
~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Thu Jun 30, 2011 10:14 pm

Yet another day where I am dealing with this never-ever-ending headache that is still a 10/10 on the pain scale. I have read over the guides in preparation for tomorrow's appointments...first with the ophthalmologist, then with my headache doctor. I'm nnervous, scared, excited, neutral, and just about every other emotion right now. I'm trying to be excited for our family vacation that we are leaving for on Saturday...two weeks at the beach is the best...but for some reason I just don't care as much about it as I use to...or heck, as much as I did before I was diagnosed. My mom told me two nights ago that 3 days after we get back from the beach, we are suppose to go to my aunt's to swim with the family (I come from a HUGE family)...however, if my doctor refers me to the Cleveland Clinic, I won't be here for that swim party...and then my entire HUGE family will be all over my parents and me about what is wrong...or my parent's won't let me go to the Cleveland Clinic...can you see now why I feel like I'm being ripped to shreds in a million different directions?! HELP!

:cry:

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 01, 2011 1:06 pm

So, I talked my dad into buying me one of those gel mats from Walgreens that Betsy was talking about. It is Wonderful. I mean, it's not a permanent solution, but it was wonderful to use last night. I still didn't sleep all the way through the night, but I wasn't up for nearly as long as I normally am when I did wake up, because that mat really helped to relieve the tension in my head, neck, and shoulders. I'd say, if you can get your hands on one, do so!!

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 01, 2011 3:12 pm

I'm glad the mat was helpful! Hopefully you'll have more information after your appointments today..the unknown is definitely the hardest! Check in w/ us if you can, otherwise have a great vacation!! If you're going to suffer w/ a headache it might as well be on a beach, right?! Smile
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 01, 2011 11:40 pm

My eye exam went well...the doctor said everything is 100% normal...I follow up with her in 4-ish months...

My headache doctor messed with some of my meds and I'm seeing him in 2-ish weeks. In that time, he is going to be seeing the guy (doctor) who runs the program at the Cleveland Clinic and see if I'm a good match for that program. At my next appointment we will discuss whether to go that road or not.

Basically more unknown...

I am trying to stay positive about the next couple of weeks, but I'm really getting concerned about what happens if things are still this bad come the time I need to go back to school (which is August 13th/14th, just for the record).

Must go clean the house and pack now...but I'll have my computer with me while I'm away so I'll keep you updated and all that jazz.

:frustrated

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Sat Jul 02, 2011 2:32 pm

Heather at least things are moving a long at last, but I do hope that they get it sorted before you go back to school. If you can let them know you are concerned about returning to school with no definite treatment plan etc, especially because you'd have to let the school aware of your medical history.

Do try to keep positive and see this as a step forward and not a step back. hug Your eye test was excellent and that must be very reassuring to you, because it means that your eyesight hasen't deteriated, and this is something to celebrate. hug

I look forward to your next update.

Heidi
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PostSubject: Re: Heather - diagnosed June 2011   Sun Jul 03, 2011 5:02 am

Heather I'm glad the mat helped some, take it with you on vacation. Have a great time and enjoy some stress free days at the beach for yourself and those of us you can't tuck in your suitcase!
Hug3 Betsy
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jul 05, 2011 1:14 am

Well, I'm at the beach. So far, things are ok. We spent some time at the pool today and the sun really started to get to me, but other than that, things are going as well as they can, despite my headache and such. I'm trying to get a lot more exercise in while I am down here, and that has actually helped more than I thought it would, mainly because it takes my mind off of my pain (plus, it's hard to complain about my head hurting when my dad has the shingles...he was told the day before we left...luckily they aren't too bad right now). Some good news is that I discovered that I've lost enough weight to be down 2 bathing suit sizes!! Yay for new clothes! All in all, the rest and the relaxing activities are going very well (reading, sewing, messing around on my computer, studying, etc)! I hope everyone is having a wonderful 4th and to update you all again sometime soon!
Peace,
~Heather~

celebrate
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jul 05, 2011 2:42 pm

That's wonderful..glad to hear you're able to enjoy your vacation a little! I hope things just continue to improve for you..at least it sounds like you're moving forward now =]
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PostSubject: Re: Heather - diagnosed June 2011   Wed Jul 06, 2011 3:08 am

Congrats on the weight loss and being down TWO sizes! That is awesome! Too bad about your dad having shingles, I hear that's no fun at all. Keep relaxing and enjoy.
cheer Hug3 Betsy
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PostSubject: Re: Heather - diagnosed June 2011   Thu Jul 07, 2011 4:34 am

I can tell you with first hand knowledge, having shingles is no picnic!! I have the post herpetic neuralgia (PHN) from the shingles, but only a very mild headache from the IH. From what I have read, the both can be very extreme!!
Enjoy your vacation!!
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jul 11, 2011 4:52 pm

There are days when the headache and the beach just DON"T mix...Plus, I'm pretty sure the meds I'm on now don't like the sun...I get home and it's all I can do to stay awake!

:frustrated

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 22, 2011 2:24 pm

Well, I'm home from the beach and I see my doctor today. I have no clue as to what is going to happen there. Things have been a little better since coming home. Today I can honestly say that for the first time in quite a while, I'm at a 7 on the pain scale instead of a 9 or 10. I am so up in the air about what I should be thinking that I'm not really thinking anything at all. Instead I'm just super tired, sleeping as much as possible. I'll keep you updated.
Peace,
~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 22, 2011 3:11 pm

Good luck today Heather! It sounds like the rest and relaxation has done some good..hope you find more relief soon!!

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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 22, 2011 5:34 pm



The very Best of Luck today Heather!
I'm thinking of you with fingers crossed.

Heidi xx
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PostSubject: Re: Heather - diagnosed June 2011   Sat Jul 23, 2011 2:31 am

So, today went pretty well. My headache is actually down to about a 6. My doctor was very excited because I wasn't wearing my sunglasses inside. He isn't changing any of my meds...instead, we are going a new route. New in two ways...first, it's new for me...secondly, it's a newer way of treating headaches. However, it's already a discussion on this board. Yes, I am talking about Botox. I didn't bring it up, he did, and it was a little eerie. Anyway, we are now waiting for insurance authorization. I see him again the day before I leave for school...so we'll see how things go between now and then!
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PostSubject: Re: Heather - diagnosed June 2011   Sat Jul 23, 2011 1:10 pm

That's wonderful news, and finally some progress for you. hug I'm sure Julie will be able to tell you more about it. Hope you have a great weekend especially now you know what's in front of you.Very Happy
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PostSubject: Re: Heather - diagnosed June 2011   Wed Aug 31, 2011 8:43 pm

Hey everyone. It's been a while since I've been on, but I'm glad I remembered that I could come here. My IIH has been acting up pretty bad over the past several days. At first I was just trying to tell myself that the increased headaches were because I was due for my period, but its been 2 weeks now...the headaches just keep getting worse and I haven't had my period (which I'm a little concerned about since I'm on birth control...). I'm back at school (after a pretty eventful end of the summer) and while everything else is going well, just trying to make it through the day without crying because I'm in so much pain is a little like trying to breathe underwater. At first, you just hold your breath and hope for the best, but eventually, it slowly starts to kill you. I don't have the opportunity of seeing my doctor again until October, either. Why did I decide to go to school 6.5 hours from home?! And because of all of this, my depression is trying to get back at me. I don't know what to do. It's days like today that I wish I had never been born...
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PostSubject: Re: Heather - diagnosed June 2011   Wed Aug 31, 2011 9:34 pm

Heather it is so g ood to see you back although I am so sorry that you're having a bad time at the moment. I know you've been through quite a bit and I don't think the stress that you're having is helping your headache much. hug This could also explain your period being late, but also IIH'ers are as a rule taken off birth control pills, so it might be a good idea to ask your Neuro whether or not you should be taking it.



Is the weather bad where you are, because it could be a Barometric headache brought on by bad weather, or maybe just the stress of you worrying about missing your period. Are you having the typical symptoms of a high pressure headache? If it continues you will as you know have to contact your Neuro or visit the ER which I know is the last thing you want to do, but may have to if it doesn't improve. hug
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PostSubject: Re: Heather - diagnosed June 2011   Wed Aug 31, 2011 11:24 pm

I'm back at school, but the stress level has been under control. My doctor knows that I am on birth control, but never said anything about taking me off of it, or even that we should TRY taking my off of it. The weather here has been absolutely beautiful, so I doubt that is affecting things. Frankly, while I'm "worried" that I haven't had my period yet, I don't typically mind when I don't. Also, it's all the usual symptoms. In addition to the severe headache, I'm nauseated, the pulsing in my ears is worse, and to be honest, something new has crept up...I'm now seeing double a good bit of the time. I can't see my eye doc until December, either. As far as if this continues...what can my doctor do from 6.5 hours away? And I don't know how I would even get to an ER if I needed to for something like this. Certain people here know that I have IIH, but they just don't understand it. I feel totally isolated right now...my only connection to any hope at all being here on this board. And at the same time, waiting for responses is agony. Why can't I be normal, have a life that a normal student has. Today is day 301 of my never ending migraine. I shouldn't complain. I have a friend who has had a migraine for going on something like 11 years (and no, she doesn't have IIH). I feel like an idiot even trying to find solace. So many have it so much worse than I do, but at the same time, I don't know how I'm going to make it to tomorrow, at least not right now. I'm sorry...I'll go away now...
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PostSubject: Re: Heather - diagnosed June 2011   Wed Aug 31, 2011 11:27 pm

:cry:
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PostSubject: Re: Heather - diagnosed June 2011   Fri Sep 02, 2011 12:22 am

Heather I know I have replied to you on Twitter about this, and suggested the Migracap, which may help you, especially as you are away at school. First and foremost, YOU are NOT an idiot, you are human with feelings, dreams and wants just like everyone else, it's just that you are hindered more than most at school by this condition, which incidently you didn't ask for. hug

Is there someone like a councellor there that you can talk to and who could help you with your teachers etc when it comes to having an IIH flare up, who can formulate a plan for getting to ER when you need to? That's what you need while you're at school, for you and your school to work with you when it comes to times like this.

If you begin to have visual problems you know that you have no choice but to go to the ER, I hope that this is more migraine, stress or tension, rather than a high pressure headache, but you know the drill if it is high pressure.

If you can meet with the person or people at school who can help you with this and give them if you can the information about IIH from this list shown on this link Information, they need all the facts and information so they can understand and help you when you most need it.



Keep us posted.hug
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PostSubject: Re: Heather - diagnosed June 2011   Mon Sep 05, 2011 3:22 am

I don't feel like I deserve to have those feelings/dreams/wants. I don't know if there is anyone up at school who can help me deal with things like getting to the ER or whatnot. My professors know that I have something and that I may have to miss a day due to that something. They don't know what it is or why, with the exception of one professor who I have entrusted with that information. How bad do my vision problems need to get before I go to the ER? I mean, it's been since Wednesday that I've been seeing double. I wish I could go to the ER, but for some reason I don't think that is going to happen anytime soon. I need to get off the computer, but I'll be back soon. Someone please respond...

P.S. I'm working on getting the Migracap
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PostSubject: Re: Heather - diagnosed June 2011   Mon Sep 05, 2011 3:23 am

:cry:
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PostSubject: Re: Heather - diagnosed June 2011   Thu Sep 08, 2011 4:38 pm

Hi Heather, sorry you're struggling so much right now. Most schools have a directory and at least emergency services..I would start there. They should be able to point you in the right direction. We all get discouraged and frustrated w/ our condition and limitations, but it sounds like you're in a really difficult place right now. Try reaching out to campus services or call the local hospital for information. Most places are willing to talk to you and make referrals. Good luck, and keep your chin up!!!
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PostSubject: Re: Heather - diagnosed June 2011   Thu Oct 06, 2011 12:23 am

So, some of you know that my doctor wanted me to do Botox treatments. I had agreed and we decided that we would put the paperwork into the insurance and we would do them over my school's fall break. Well, I called the office again today because I still have not heard from them about the insurance. This time, instead of just accepting that they would call me when the insurance came through (it's been 2 or 3 months of them telling me this), I pushed a little. What I discovered has me really upset, though. What I discovered is that my insurance hasn't come through because the office NEVER STARTED the paperwork!!!!!!!! So, they agreed to start it today, but they aren't going to make any guarantees about when the insurance will come through. Well, see, my fall break is in a week and a half. In addition, for those of you who haven't seen my bazillion posts to Heidi on Twitter asking to talk, my head has gotten really, Really, REALLY bad. Most days I am rating myself as a 9 or 10 on the pain scale. The only relief I've had were BRIEFLY after a spinal tap a month ago and this past weekend where the pain of passing a kidney stone for four days distracted me from the pain in my head. Heidi and I have talked on numerous occasions simply trying to talk me out of deep depressions, walking me step by step, starting with the trip to the ER last month that I had delayed for a week (or more) and lasted for 14 hours, ending with a sedated spinal tap. Since then, I've seen a neurologist here in the town where my school is (6.5 hours from home), she has put me on a new med (that so far has done nothing...Namenda anyone?), been back to the hospital 2 weeks ago to get an infusion that ended up not doing anything but having me miss my computer science lab for the week, had to deal with informing all of my professors about IIH and why I was missing so much class and homework, and, in the middle of it all, had to put on a good face and be a bridesmaid for my brother's wedding. There are more days where I don't think I can go on anymore by noon than I can count. I don't know where to go from here or what to do anymore.
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PostSubject: Re: Heather - diagnosed June 2011   Thu Oct 06, 2011 4:26 pm

Heather I know it all seem to be very bleak and never ending at the moment, but it wont always be like this, and I think the main step is your medical team. You need a Neurologist who is knowledgable in IIH and who can put you on a suitable treatment plan for you that will be able to stabilise the IIH.

I think it would be a good idea to contact Advocacy for Patients with Chronic Illness, Inc who deal with the following things;

• How to get your own medical records.
• How to get and keep health insurance.
• How to get health insurance coverage for particular treatments, drugs, and/or therapies.
• How to get private disability insurance coverage.
• How to get Social Security Disability Income.
• How to assert your rights under the Americans with Disabilities Act.
• How to assert your rights under the Family and Medical Leave Act.
• How to ensure that schools accommodate students with chronic illnesses

I think you need to take more control over your rights as a patient and regarding your treatment when it comes to dealing with your doctors, and I think they will be able to help you do this.

Heidihug
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PostSubject: Re: Heather - diagnosed June 2011   Fri Oct 14, 2011 5:47 pm

Hey everyone,
So, my insurance finally came through for the Botox injections. I'm getting really nervous about it, though. I am scheduled to get the injections on Wednesday. I wish it was sooner, though, both so that it starts to work faster and so that I can get it over with. However, I'm also in a LOT of pain and I don't know what I'm going to do if these don't help. I also don't know what I'm going to do while I wait for the injections to "kick in." I feel like another spinal tap is in order, but I can't make them do that if they say no. The new meds they have me on aren't working at all. In fact, things have gotten worse since I've started taking them. Right now I am so nauseated that I don't know how I'm not throwing up. Plus, I'm seeing everything in triplicate, and my glasses only help me to see things in double, and everything, no matter whether I'm wearing my glasses or not, is blurry. I don't go to see my eye doc till December, either, and not by my own choosing...she is just that over scheduled. I'll be sure to let you all know how things go, though.
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PostSubject: Re: Heather - diagnosed June 2011   Tue Oct 18, 2011 8:55 pm

Heather, I completely understand! I had the injections for migraines a few months ago, unfortunately all I noticed is that my eyebrows didn't move anymore..LOL. The neurologist did tell me that it has been affective for over 80% of his clients, so hopefully you'll find relief. At this point they're thinking my shunt is overdraining, so everything is from low pressure..no meds or injections would help me.

There's plenty of information about the procedure online. It's basically a series of 31 injections in your head and neck. The needles are small and didn't seem to hurt much at all, but the serum feels like a bee sting..he said the forehead is the worst, but the back of my head also didn't appreciate it..haha. It really wasn't that bad, but it is uncomfortable. Everyone kept telling me that Botox didn't hurt, so I wanted you to be prepared..hope it helps! I had very little bruising and felt ok by the time I walked out to my car, so I'm sure you'll be fine..good luck!



my fingers are cross
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PostSubject: Re: Heather - diagnosed June 2011   Sun Mar 04, 2012 4:03 am

Ok, so it's been a while since I've been on, but I thought I would stop by and update all of you. Things had been going along ok...I mean, nothing great was happening, but I'd been dealing with my pain and actually doing well in the rest of my life. Then over the past 2 or 3 weeks, I've been realizing that the barometric pressure is really starting to screw with my head. Every time it would change, there would be a renewed energy behind my pain. Then this past week, it all came to a halt...my life that is. I went to bed Tuesday night around 10:45pm and didn't get out of bed again until Thursday at 12:30pm...and at that only to go to therapy. I came back and went back to bed, only to get up again Friday at 12:30pm. And what makes it all worse? Friday was my 25th birthday. I spent most of it in bed. Friday night, I did get to go to a campus ministry event with some friends, and other friends and I celebrated this evening (after I slept until 1:30pm today, too, due to pain). But I miss life before IIH, before migraines...before day 486 of this never ending pain...
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PostSubject: Re: Heather - diagnosed June 2011   Sun Mar 04, 2012 6:17 am

Oh, and one more update...just e-mailed my doctor, pretty much begging him for a spinal tap...
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PostSubject: Re: Heather - diagnosed June 2011   Sun Mar 04, 2012 1:22 pm

Awwwwh Heather, I know it must be hard at the moment, but things will get better with time, try to stay as strong as you can and keep your chin up!

It's great you managed to regain a bit of social life again by being able to go to that event and at least celebrate with friends, I really hope your doctor will be able to make you feel a little more comfortable by giving you a spinal tap! I will have my fingers crossed for you Smile

And a belated Happy Birthday to you!
Laura x


Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less - Marie Curie
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