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 New to forum and newly diagnosed

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Crg553
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PostSubject: New to forum and newly diagnosed   Tue Jun 07, 2016 10:17 pm

Hello all! I am so glad and excited to have found this forum! I will try to make this as short and sweet as possible.
I never really had issues with headaches other than sinuses (I had sinus surgery in 2006) until all of a sudden in early 2013 right around the same time that I was dx with hypothyroidism. (My family has a long running for endocrine disorders, mostly thyroid, so I sort of just fit the bill.) I remember the night very clearly. I was dealing with some abdominal issues and had some loose stools (sorry TMI i know), sat down and i got this pain shoot shoot shooting up the back of my head, my vision went and this whooshing in my ears. I went to the floor and my husband rushed in. I tried talking but it was all I could do to breath. I debated a trip to the ER because at the time we had, what most in the world refer to as a, band-aid station. I didn't trust them with a broken bone let alone my headache/brain pain. I went to my family doctor the next day and she started treating me for migraines. gave me a ton of information on them and sent me with a script for imitrex. I was find minus the ringing in my ears for almost two months, it hit again, same situation, except no abdominal issues, I sat down to urinate and it hit, this time I went to ER. They treated as a migraine as well and gave me the 5-6 IV cocktail and I left 4-5 hours later with pain at a 3, whooshing/noises and seeing weird stuff in my visual field. My family doctor sent me to a Pain specialist. He did an MRI and it came back clear. We continued treating as migraines. I had no more issues and just got use to the visual stuff and the noises in my ears. (I guess I was in remission??) A year and half (or so) later I noticed that I couldn't do ANYTHING without feeling like my head was going to explode. Walking up stairs to go to bed at night, I had to sit at the top or I would black out or at least my vision would go out. The whooshing got worse and finally the pain got to me. I explained everything again to the pain specialist and he started giving me nerve blocks, thinking it was occipital neuralgia. The nerve blocks helped with the pain and nothing else but, I thought it was all in my head so I carried on as usual. We had to repeat the nerve blocks roughly ever  weeks for them to help with the pain and the pain doctor was beginning to think maybe we were on the wrong trail. Fast forward to February of this year, I fell down the stairs. I felt horrible after, a CT showed that my cerebellum tonsil were sitting a little low. The pain in the back of my head was continuous and the nerve block didn't touch it this time. A neurosurgeon said that my tonsils are ectopic but not the cause of my issues. So, my pain doctor had me go back though all my symptoms with him and that is when he decided to perform a lumbar puncture, I could not relax,(phobia of needles I can't see) and my pressure was only a little elevated he said. After the LP I felt FANTASTIC but then I got a low pressure headache :( We have been treating with Diamox since. We started Topomax last week and my pain dr just upped in yesterday to 50mg a day. the diamox is 1500mg a day. We also started trying the nerve blocks with the medications to see if it will help with the pain any. That is my story...so far.... I go to the eye doctor tomorrow, I don't believe that I have much of an issue with my eyes, but i don't know. All I know is that, I will be the very first to admit that I am a weakling when it comes to pain, and this stuff is dreadfully painful. I am very very glad to be part of this forum. I am excited to have found you all! I look forward to talking with you all! I hope you all have a  great pain free day! Thanks for reading my story. thank you
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PostSubject: Re: New to forum and newly diagnosed   Wed Jun 08, 2016 4:27 pm

you are NOT a weakling when it comes to pain.  IIH is one of the most painful things and it would take out the strongest person.  I find that people with IIH are actually quite stoic, because we get used to the most dreadful things.  I'm glad you finally got diagnosed.  what was your pressure?  many of us here have "borderline" pressures and no eye disease.  I am in remission from IIHWOP and my pressure was 23.  my son's pressure also is 23 and he is being medically neglected.  one point I'm not sure if you realized.  there is a very specific reason why your symptoms suddenly worsened on the toilet.  Valsalva maneuver (bearing down, coughing, sneezing, crying, even talking can produce it) increases ICP.  

welcome to the forum!
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PostSubject: Re: New to forum and newly diagnosed   Thu Jun 09, 2016 12:03 am

My pressure was just above 20 I believe.... At first it was 18 and I really could not relax. I took a deep breath and my doctor said it shot up to a little above 20 just like that.
I went to the eye doctor today and I have lost a little of my peripheral vision in my left eye. He said that my eyes show evidence of swelling and that my nerve in my right eye is raised. I don't exactly know what any of that means, but he said that wasn't bad, so (to me) that's good right? I had to pay out of pocket because my insurance wouldn't cover the doctor or appt. I have to know find a doctor that my insurance will cover. He did say that he wasn't concerned so I am not either. Most of my visual symptoms are mostly just blurred and doubled vision, which is there roughly 90% of the time. The black/grey outs don't happen as often now that I now what and how they happen, I pace myself. I have a chair at the top of the stairs and sit as soon as I get up there. Surprised Take that black outs!!
It is all definitely a learning curve.
GREAT thinking with the Valsalva maneuver!!!!! I have had issues with it while laughing and coughing, I'm not so sure about the others. Getting a diagnosis was a strange feeling, on one hand it was welcomed because FINALLY there was a cause for all my problems, but on the other hand it was scary because I had never heard of it nor had anyone around me. I have done a lot of reading as of late to find out anything I can, it helps keep my mind centered I guess. I thank you for your support!!!!


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PostSubject: Re: New to forum and newly diagnosed   Sun Jun 12, 2016 6:57 am

I would definitely find a new doctor, one who is appropriately concerned about your vision loss.  you ought to see a neuro-ophthalmologist.  if you have swelling of your optic nerve and measurable vision loss and visual symptoms, this is concerning and it needs to be actively treated and followed.  you are a perfect example of why these neuro-idiots who think that a pressure of 20 is fine are completely clueless.  here you have obvious visual symptoms and loss with a pressure that my son's neurologist thinks is not a problem and not warranting treatment, and they think that relying on his history and ability to perform a visual field on confrontation, age 8 and autistic, is reasonable.  but they won't rely on his history that Diamox helps him, to warrant treating him.  but I'm not bitter...... LOL.
anyway, it makes you wonder.  there are people who have normal ICPs while awake, yet have papilledema caused by ICP spikes that occur only while sleeping during apneic events: it's the sleep apnea causing the papilledema that appears to develop in the presence of "normal ICP".
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PostSubject: Re: New to forum and newly diagnosed   Sun Jun 12, 2016 11:45 pm

WOW! I wasn't concerned at all because the eye dr wasn't! I am so glad to have you all here!!!! Thank you for your advice! I will def look into finding a new dr. I go to see a new neuro but I can't get into see him until August. My current neuro specializes in pain intervention. He claims that seeing the new neuro would more or less be a 2nd opinion, which to me, sounds perfect and EXACTLY what I need. I will be calling my insurance company Monday to find a new eye dr that they will cover. My only worry is they will say something along the lines of "your only covered for biannual eye checks", so I might have to go through my neuro to get one set up. I don't know. I will have to wait and see what my insurance company says Monday I guess. Since it is more of a health thing than an 'eye'?? thing?
I thank you so very very much for you help and advice! I will be waiting patiently (hardly! LOL) for my new neuro appt in August!


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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 13, 2016 8:08 am

you are very welcome.  your sight is critical and it goes beyond just a health or an eye thing.  if you lose your sight you become disabled.  sudden vision loss is a medical emergency.  hopefully on treatment you will improve, and you will not worsen, and your current state will be reversible.  but after being on these boards for a few years, I can tell you that some people experience rapid sudden vision loss and it is not always reversible.  make sure you have a good ophthalmologist who is appropriately concerned and following your condition closely.  if you have a sudden worsening, I would go to an ER at a major university medical center.  and don't let your insurance tell you that you can only see the doc twice a year.  this isn't that kind of problem, you need to be followed as often as your ophthalmologist says you do, in order to protect your vision.  maybe your doc was trying to reassure you that he thinks he will be able to get this under control, and it came off as nothing to worry about.  I don't mean to be going the other way, don't mean to scare you, I just want you to be appropriately concerned so that you get proper follow up.
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PostSubject: Re: New to forum and newly diagnosed   Tue Jun 14, 2016 12:40 am

Ok, so I called my insurance today and they helped me figure this all out. They said that all and any visits would be covered thru the health coverage instead of eye coverage...... They gave me three different places that I could go to that are close to me, well they are roughly 30-35 miles from me but that is as close as it gets. That would be the closest major hospital too. The local hospital tries to be major but they are nothing more than a 'bandaid station' on most days. I haven't had too many issues with my vision going lately. The last time that I ha a grey/black out was before I started the diamox. I felt pretty good until yesterday and today. Been having some pretty bad waves of pain and the constant headache is stronger. it's just the weather!!! It's been pretty hot and humid the past few days I felt fantastic a few days ago. I worry about taking Ibuprofen too often, I don't want a rebound headache, so I'v tried a few days without and have made it so far!!!! (selfie high five!!! LOL!) I thank you again for all your help and advise! I am soooooo glad that I found this forum.


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PostSubject: Re: New to forum and newly diagnosed   Wed Jun 15, 2016 2:51 am

glad you worked that out with your insurance.  yes the humidity gets many of us.  30 miles isn't so bad, some people have to go much farther to get to a hospital that is worth anything.  I am not sure I believe in rebound headaches.  or I don't think it's such a big issue that one should not treat pain.  I almost think it's an excuse doctors use to avoid prescribing pain medication.  and I'm a doc.  the only thing that makes sense to me, is if the NSAID pain meds actually reduce brain swelling via treating inflammation.  any time you take something that reduces brain swelling, then if you stop it, your brain will swell a little bit (and your head will hurt).   (I experience this with caffeine.  it is plausible that it reduces brain swelling.  it helps me.  I get a headache if I stop it.)  sooooo...... is that a reason to stop taking something that reduces brain swelling??????  OK this is just my personal bias here talking, my speculations.  you have to do what works for you.
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PostSubject: Re: New to forum and newly diagnosed   Wed Jun 15, 2016 3:36 am

That totally makes sense to me!!!! I stopped caffeine. mainly because i was really over doing it. I was drinking about a half a pot to a pot of coffee myself each day. Every time I say I'll cut back, I try and I fail so I have to stop. I have tried and have noticed that when I do drink coffee that I seem to have more pressure but I don't know if that is true or not, it might just be linked to something else??... Once I have my pain under control I will try so trial and error. I have never dealt with a rebound headache either, so I am not sure if they are just some wives-tale or what. Today has been rotten, had storms all day long so i've been laying around like a zombie. Thank you for helping me so much! I really do appreciate it! It's like belonging to a secret society that knows the ins and outs of intracranial hypertension! LOL! Here i was a couple months ago, wondering this world not even understanding what it was that I had and you have helped me so much! I am so grateful for this all, thank you
OH, I almost forgot, I know that you can go into remission, is this disease ever treated and gone?  Also, do people with this normally qualify for disability? I am just wondering, because I am having trouble waking and being functional most days. 
Again, thank you for all your help!


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PostSubject: Re: New to forum and newly diagnosed   Thu Jun 16, 2016 2:13 am

hi, I am so glad to be able to help.  it's the only thing that makes sense of this horrible illness, being able to make the way smoother for others so you don't have to reinvent the wheel.  it took 11 years for me to get a diagnosis.  because I don't have papilledema.  I went into remission after a thyroidectomy years ago, then it slowly creeped back in and came back after my second pregnancy.  I think it depends on the etiology of your problem, whether it can go away for good or not.  I know mine is related to my sleep apnea.  so as I age, and my sleep apnea gets worse again, the IIH may come back too.  I'll link to a description of my story below.  jaw surgery put me into remission.  but I can still be triggered by chemical exposures, even though the symptoms are so mild now that I can deal with it.  before, I was non-functional.  a great many of us are on disability.  some diagnoses qualify off the top, but mostly SSDI looks at your functioning.  if your illness impairs your functioning to the point you can't work, and it is expected to not improve, then you should qualify for SSDI.  the key to getting it is to go into excessive detail about your ability and lack thereof to function in your activities of daily living and things that you would need to have to be able to work.  for me, even though I'm better, I still am triggered by chemicals, and I proved on my last LP that my ICP goes up upon exposure to deodorizer chemicals.  therefore, I cannot be in any environment in which I will be exposed, which is all work environments.  working at home is not the general economy so it doesn't factor in to their decision.

caffeine is known to increase CSF production, therefore it could theoretically increase ICP.  if you have found that to be the case, then it is for you.  it can also reduce brain edema.  since the etiology of my ICP is probably more related to blood brain barrier dysfunction and poor CSF drainage of brain edema, then I think that's why caffeine helps me.

here's my story: 
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now

Deb
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PostSubject: Re: New to forum and newly diagnosed   Fri Jun 17, 2016 1:09 am

Thank you for sharing the link! It was very nice to read you story! Please forgive me for my absence, We had some storms here the past few days and I wasn't handling it very well. I've pretty much spent the time in bed. I am a 'stay at home mom' now, I was a medical assistant/lab tech. I had to have a hysterectomy in 2011 and everything has just sort of snowballed from then. I homeschool my girls and babysit my niece, she will a year next month but it is getting harder and harder to do. I feel horrible saying that babysitting is hard. I'm about 550/50 on good vs. bad days so far it seems. My head (the back of it) has been extremely tender though and I am not sure why.  My neuro/pain specialist dx me with occipital neuralgia before we did the LP in March and he dx me with IIH. My cerebellar tonsils are ectopic, they don't sit low enough to qualify for Chiari type 1. The neurosurgeon that i was referred to said that it doesn't sit low enough to cause the IIH. I do have a slight curve of my cervical spine to the right. I was hit by a car in 2007 but she had just turned the corner from a stop light so she was only going roughy 10 mph. I had nothing broken, but was in a wheelchair for a couple weeks due to pain, which was all on my right side. Sorry, I jumble everything together when I write, I do it when I talk too. I had had my second child 4 months previous to the accident. After 'healing' from it I started having issues with my cycles. I would bleed 28/31 days. this went on until finally in 2011 we scheduled a hysterectomy, I was sick of being a pin cushion and testing all these medications and different trial and errors. After my hysterectomy I was good for about a year then I started feeling run down. They ran every lab they could all to reveal all within normal limits, I was borderline low with free T4 but TSH always came back right dead center of 'normal'. Late 2012 I got sick ended up in the hospital with what they thought was pertussis, treated as pertussis but wasn't pertussis?? about 2 months later is when I had my first high pressure headache. Then late 2013 they dx me hypothyroid and started treating with levothyroxine. I've had a total of 4 of the severe out of nowhere attacks. Several of the waves that knock you off your feet and take your breath away. I have to lay down several times a day and I try to sleep often. I believe that my issues are from too much fluid, possibly not draining properly but I'm not sure. I'm hoping that the new neuro I am to see in August will want a MRV so we can check the vein structure Thank you for listening to me and thanks again for your help and advise!


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PostSubject: Re: New to forum and newly diagnosed   Fri Jun 17, 2016 2:52 am

dead center of "normal" TSH per the lab, is actually elevated in my book.  and many other people.  the endocrine society decided that a TSH of 3 or higher is questionable and significant if replicable.  so you were probably hypothyroid for awhile before they decided to treat you.  make sure your TSH is close to 1.0.  no higher than 2-2.5.

when I hear your story I think that maybe something happened with your hormones after the hysterectomy that may have affected IIH or made any pre-existing OSA worse.  the cervical injury could be influencing CSF drainage by affecting resistance in the draining veins of the neck.  what antibiotic did you take for the un-pertussis episode?  it's possible that med could have triggered IIH.

and don't feel like a wimp for having trouble with child care!  it's one of the hardest jobs when you have IIH!  all the screaming, omg.  it's very hard to take care of other people when you can hardly take care of yourself.  I had a 2 and 3 year old when I crashed, I know.
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PostSubject: Re: New to forum and newly diagnosed   Fri Jun 17, 2016 9:58 pm

I think we may have just figured it all out!!!! They put me on a few different medications. I was on two nebulizer treatments BOTH has steroids! They put me on three different pills One was a corticosteroid, one was azithromycin, and the other was bacitracin! Im sure that it may be a mix between the steroids and the cervical spine with my hormones but maybe???? I don't know what do you think? I just remember they had me on the steroids for months! Then they stopped them because I got better. They had also prescribed me telson pearls because of the coughing attacks, my vision blacked out several times while having these coughing fits. I can remember there was sooooo much coughing and I had blood shot eyes and burst blood vessels in my face. 
My family has a long history of endocrine disorders, whether it be diabetes or thyroid. My mother had graves disease and had to have an emergency thyroidectomy in 2006 due to severe thyroid storm. she was in a medically induced coma for 36 days due to it. I have had issues with my hormones as far back as i can remember. It started when I was 12. I had ovarian cysts forming on a monthly basis. I was put on several different birth controls to try to even me out and none worked except for ortho-ovum 1/50 ('the day after pill'). I was told when I was young that I would have a great difficulty becoming pregnant because of the way my hormones were. I didn't ovulate correctly, but my labs always came back normal. My family dr from my childhood until age 23 passed away and with her went all of my understanding of life pretty much. Now any dr I see they all depend on lab values and not symptoms. I have tried to figure out my hormones for a very long time, been to several gynecologist and after 3 years of sporadic bleeding due to not ovulating properly I threw in the towel. I was off the ON 1/50 for a year before I had my first daughter. After I had her I breast fed and didn't seem to have many issues. I had a ton of problems losing weight and was on a progesterone only birth control because I breast fed until she was 1.5 years. (I pumped and bottle fed so I could go back to work at the lab and go to school) That was in 2004 when I had her. Then in early 2005 I started having choric sinusitis and they ended up having to perform sinus surgery for horribly deviated septum and totally closed maxillary sinus cavity. That was done in 2006. In 2007 I had my second and last daughter.  I breast fed her as well until the accident, I couldn't hold her after the accident and I was on heavy pain meds. I do remember my family dr did try me out on some estradiol for a very short stent thinking my fatigue was linked to low estrogen. 
Since I started being treated for hypothyroid my labs have been normal. TSH is normally between .9-1.5 and my Free T4 is .9-1.1 Free T3 stays right around 3. I am on a super low dose (25 mcg) and feel like I have it under control, for the most part, except in winter time.  I seem to lose more hair and my finger nails get dry and brittle and I can't get or stay warm in the winter. I figured that is my thyroid because it never happen before the other thyroid stuff started in. 
When you say 'brain fog' what do you mean exactly? I get so confused sometimes and it's like I have two brain cells playing freeze tag! Is that part of the IIH too? 
Sorry this is so long! Thank you for all of your help! I think, because of your brilliantly investigative mind, you helped me discover the point in which my IIH all started! THANK YOU!!!!!!


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PostSubject: Re: New to forum and newly diagnosed   Sat Jun 18, 2016 9:00 pm

I had graves also.  that is scary what happened to your mother.  it does make you wonder if your hormone issues have played a role in this for you.  I got IIH symptoms almost concurrent with my Graves onset.  I think it may have been related to my goiter.  I'm glad your thyroid is so well controlled.  I also have adrenal dysfunction and I suspect it is related to the IIH.  secondary to an empty sella syndrome that is not seen on MRI.  there's evidence this can happen in IIH.

I'm not sure about the steroids, it should probably be oral steroids, not inhaled, to trigger IIH.  and even with me, I took steroids for about 6 weeks, and stopped about 6 weeks before I crashed into IIH in 2009.  so it seemed more related to a withdrawal, like I was talking about above.  while on the steroids, I didn't have any headaches and felt great.  it treated my lowgrade brain edema.  when I came off, the brain edema rebounded big time.  so I think taking steroids can cause IIH to be declared when it has been lowgrade before.  I know they think steroids can be directly causative, but I'm not sure they understand it completely.  the other meds are not ones known to cause it as far as I know.  now, opiates can increase ICP by making you hypoventilate, but they wouldn't leave IIH behind when you stop them, and I don't think the normal person is going to get a significant increase in ICP from opiates.  but opiates can make sleep apnea worse, and one of the clues that my sleep apnea was getting worse is that suddenly when I took them, I kept waking up and couldn't sleep well.  make sure you aren't missing a mild sleep apnea as a trigger for this.  it can be a very complex thing to try to sort out.

brain fog is an alteration in sensorium which feels like you are underwater, in an unpleasant way.  like, you have the flu, or you have a hangover.  it can definitely make you feel confused and spacy, but it's more than that.  when it's been the worst, it feels like I'm trying to wake up from anesthesia.  for a long time I thought it was a phenomenon called silent migraine.  I suspect that silent migraine is actually ICP, in a patient who has been misdiagnosed with migraine.  brain fog is difficult to explain to someone who has never experienced it.  my 8 year old son started telling me about it, and trying to quantify it, when he was 5.   he has IIH and autism.  he told me that perfume makes him feel "dizzy", and after exposures he will say it made his "step level" go up to a 5 or a 10 or 100 or infinity.  this is similar to my description of brain fog in terms of saying it feels like I'm 10 feet underwater or 100 feet underwater etc.  that's how I knew he was describing ICP to me. but someone who hadn't experienced it wouldn't understand what he meant.  we don't always have headaches with this.  I'm not sure what defines whether you have a headache or brain fog when the ICP rises.  maybe brain fog is just brain swelling without a significant increase of ICP, and once the ICP spikes enough then the pain comes.  

I'm glad I can help you understand this.  I certainly have spent an inordinate amount of time just thinking and thinking and researching and writing and trying to figure out the answer to the question: "why do I feel like crap?"
LOL.
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PostSubject: Re: New to forum and newly diagnosed   Sun Jun 19, 2016 9:48 pm

I do still have some swelling with my thyroid. My endo normally has me set up to do an ultrasound every year to monitor it. 
I do not believe I have sleep apnea. 
I do wake with what you call brain fog and have it quite often actually. Anytime I try to exercise or I climb the stairs to go to bed it happens. I also wake up with it a lot. It's almost like you just got done with a surgery and you can't get your eyes to open all the way or you can't wake up but you want to. It's like an all over pressure weighing you down and not really that you can't catch your breath just that its so weighed I guess?? if that makes sense? I get really dizzy when it happens and that is when my vision normally goes black. I have to sit down for about 2 min and I seem to get better, normally! Sometimes it takes a couple hours to go away and that is when I have the severe headaches that fallow. 
I have three different types of pain.
My pain seems to be there almost constantly, at the back of my head, like a dull ache. It is behind my eyes as well most of the time and at my temples. Sometimes it is worse but normally like a severe tension type pain just at the base of my skull. It is only completely relieved by a lumbar puncture. (We started performing occipital nerve blocks again to help disguise the pain, which helps for a couple weeks, but thats all, I'll take what I can get!) Then there is the waves of pain. I am not really sure how or when t'll happen. I haven't been able to find a trigger for it yet. It can happen anywhere in my head it just happens and it stops you for about 30 seconds. It normally doesn't happen while I am laying down or sitting around but if I am moving around that's seems to bring it on. It seems to be mostly controlled by the topamax so far, thankfully!!!  Then there's the pulsating pain at the back of my head happens doesn't happen near as often thankfully! it is like a shooting HORRIBLE pain and I really don't know exactly how to explain it. It's like shocking pulsating that radiates up the back of my head. It doesn't go away, my eyes dim and my ears whoosh so loud. The pain is so severe that I can't hardly breath. All I can do I concentrate on breathing and I get very very confused and nothing seems to make sense. I feel like I am going to die. We believed for a long time that it was occipital neuralgia because of the shocking shooting pain. I haven't had many of these attacks, only 5 so far. (another THANKFULLY!!!)
I do believe you are right with the hormones. I have always thought that it has had something to do with everything in me. Everything always comes back 'within normal limits' (I really loathe that phrase) but I still feel like my biggest problems can all be traced back to my hormones. 
My grandmother took a medication that was created and distributed by Eli Lilly to help keep your child and carry a child. I have two aunts, one was born infertile and one was born with severe hormonal issues, and my mother had severe graves disease. They are DES sisters. I don't know if you have ever heard that or not. The medication was never tested or anything, i only know what I have read, and what I have been told by my family. I know that it apparently messes up your endocrine/hormonal system. I will try to dig for some more info.


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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 20, 2016 6:39 am

I do know about DES, although I don't think it has anything to do with the Graves.  I'm a doc, and I would never have thought I had sleep apnea too, but it turned out to be the key to everything.  I think if you are waking up with symptoms, then you have to question what is happening in your sleep.  sleep is the last frontier.  it might just be that you need to sleep with your head elevated, although this can help sleep apnea also.
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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 20, 2016 5:28 pm

I changed my pillow arrangement last night and I feel a little better today. I did still want to sleep longer, but I always want to sleep longer LOL! I have always been a big fan of sleep. My husband makes fun of me for it. When asked what my hobbies are I always say sleep as one of them hahaha! I had been sleeping with a cervical pillow, but I sleep on my side and I had noticed at times that it puts pressure on the front of my neck/throat area I'm hoping that was enough to cause the flares in the mornings. I will test this theory over a few more days. I would love to find a wedge pillow but since I sleep on my side it may create some lower back issues. I did wake today feeling pretty well though. Thank you for your sleeping with my head elevated advice! I hope the doesn't jinx me!!!! 
It is also very good to know that the Graves isn't caused by the DES. I didn't think it would be, I thought it would only cause issues with hormones other than endocrine. Like I said before, our family has a very long history of endocrine disorders, whether they be diabetes, adrenal, or thyroid. I was dx with hypoglycemia at age 15 (fasting, non-diabetic) but I have just "ate" around it. LOL! 
I really really appreciate ALL of your help! You're a great! Hopefully one day soon you can get back out there and do what your wonderful mind is made for, healing people. You have an amazing investigative mind that is so helpful, we need more doctors like you! I got into medicine because i love caring for people. I, in no way shape or form, have a mind like yours, but I wish I did. So knowledgeable! Thank you again, for everything!


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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 20, 2016 6:06 pm

Wow Chris, you've had quite a journey just since joining our forum..lol. Sorry I'm late to the party, but welcome! It sounds like you and Deb have figured some things out..at least enough to make notes and talk to the physician about. I have a bit of a headache today, so admit I only skimmed through this thread..forgive me if I repeat things already suggested.

One thing that does help me when I'm having high pressure symptoms is finding that sweet spot while laying on my side (45-60 degree angle maybe). I just prop myself up with pillows, but it does help take some of the pressure off. Cool pack on my eyes and the back of my head also help. My neuro-surgeon also recommended caffeine, although I know not everyone can tolerate it. If I drink a Dr Pepper fairly quickly when symptoms start it seems to take the edge off..although that may be more for low pressure symptoms. I tend to have both depending on weather, activities, etc..how my shunt is flowing that day, I guess ;) I also function much better on a vegetarian, 51% raw diet. Processed foods all contain inflammatory elements, so it's best to limit them as much as possible. Also, I would keep a symptom log. Include foods, sleep patterns, meds, and any symptoms you have from vision to pain.

Unfortunately, Deb is right and not may "specialists" understand IIH, so we have to advocate for ourselves and educate them..politely. One thing that always strikes me is dismissing IIH because opening pressure isn't high enough. I have learned over the past 20 years that everyone's "normal" is different, so it's really the response you have once CSF has been reduced. If symptoms improve, then chances are the pressure is too high for you..no matter what the number is! It also changes for a person depending on age, weight, health, and other factors. I was originally diagnosed with an opening pressure of 18, but now that's where I feel best. I know other members have shunts set at 9 or 14 and I've had mine as high as 22..it really just depends on how your vision and symptoms are affected. I also have had family members that just had one episode of IIH lasting just a few months with treatment and it's never come back, so remission is possible. Unfortunately, it doesn't always last, so you have to be diligent and learn the signs. One thing they usually focus on is weight, but with Deb and others weight was never an issue. I personally gained 100lbs after diagnosis and can't lose it even when eating raw foods. Everyone is affected differently, so it's a lot of trial and error..that's one of the reasons a symptom log is helpful.

You definitely need a neuro-ophthalmologist that is concerned about your vision loss and increased pressure..you should have neither of those things if being properly treated! I hope your new doctors are more attentive, but, if not, move on..no one knows your body better than you do!!! I hope you find some relief soon..

Take care, and keep us posted!
Julie
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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 20, 2016 6:44 pm

Hello Julie! 
I have been keeping a close eye on my diet. I drink a ton of water, can't seem to help it, I'm so thirsty. I am at a BMI of 26.7, which is just over the line for overweight. I normally don't put any stock in BMI for most people. For me I do because I have very little muscle mass, because i have complete exercise intolerance thanks to the IIH. The break down I get for BMI is this: Normal weight = 18.5–24.9 
Overweight = 25–29.9 
I have lost roughly 10# since starting the diamox, but it is also getting warmer outside and I know this sounds strange but I lose in the summer and gain every winter. I am like a mama bear. We joke about it at home because I say I'm packing on my winter pounds. I always have done it, I gain about 15-20# every winter and lose it all in the summer. I can't say that it is all due to activity either because I really am not an active person, I try but my head fills up like a balloon and my vision turns off. I do feel that I suffer from SAD because winters are very rough on me. I really do wish I could hibernate! LOL! 
I never thought of the ice pack on the eyes. I always do on my neck and I rub peppermint oil on my neck and temples, between ice packs. Feels good, doesn't last long but helps take the edge off a little. 
Thank you for the advise and reply! I am really looking forward to meeting the new neuro in august. Hopefully he has some insight. The neurosurgeon I seen about the ectopic cerebellar tonsils said he was refereeing me to Dr. Snook because he knows more about IIH than that others he could refer me to. So my fingers are crossed!!! fingers crossed Thanks again!!! Hope your you can get some relief today! Im dreading this week, suppose to storm over half the week....EEEK! Nothing worse than storms for me!! 
If you try the peppermint oil make sure to try it in a small bit first on the inside of your arm, some people can't handle it, it can burn your skin. I have been using it for so long though I don't know if it ever effected me. if you can handle bengay and other muscle rub I'm sure you'll be fine but just be careful. 


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PostSubject: Re: New to forum and newly diagnosed   Wed Jun 22, 2016 3:52 pm

Seems like you're making progress..good luck, and keep us posted!
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PostSubject: Re: New to forum and newly diagnosed   Wed Jun 22, 2016 9:10 pm

I will definitely do so. I owe it to you two here at this forum for all of your help. 
I gotta hand it to Deb for all her help! She has really put a lot of time and energy into this. It has helped me more than words can ever explain and more than I can ever thank. I am so very grateful for finding this forum. 
Once I find out more from the new neuro I will let everyone know. 
Again, I thank you both so very much for all of your help!


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PostSubject: Re: New to forum and newly diagnosed   Sun Jun 26, 2016 6:16 am

hi, sorry I was out of touch for a week, I was out of town and had minimal internet access.  hopefully tomorrow I will write some more.  I'm so glad I've been able to help you so much!
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PostSubject: Re: New to forum and newly diagnosed   Sun Jun 26, 2016 5:33 pm

hi C;
one thing that has seemed to make a difference at times is sleeping with a soft cervical collar, to keep my neck in the right position.  some of us have found that a flexed neck can influence ICP to increase.  one friend has to be very careful while using electronics not to look down and flex her neck.  I do worry about pressure on the jugular area though, so make sure it isn't too tight but just right to prevent the neck flexion.  be careful with wedge pillows: I haven't found any that don't have memory foam or some other smelly chemical.  getting exposed to that sort of defeats the purpose.  why do you sleep on your side?  what happens if you sleep on your back?

regarding your weight fluctuation, I wonder if your thyroid requirement increases significantly during the winter and then decreases in the summer, leading to this change in your weight.  I've heard of people for whom this is an issue.  other things you have noticed suggest this as well.  what time of year was it when they determined that 25 mcg was the dose you require?  this is very low and I wonder if you should get your labs checked in November to see what is going on.  it may be that you do require a higher dose in the winter, or maybe adding some T3 at that time.
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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 27, 2016 2:05 am

Hello! I sleep on my side because of the back of my head. For some reason it gets very tender, if I sleep on my back, the back of my head becomes more tender than usual.
As for my weight, I believe you are correct. I was mid/late fall when they started me on the 25mcg levo. I believe that I do need more in the winter time and less in the summer. I do great in the warmer months on the 25, but feel really hypo in the colder months. I have asked my endocrinologist about this and she said that isn't something that could happen. I am set to go back and see her in December and I will be asking her if we can at least try a little bump up, for the colder months. Now that I am a few years into this I have began to understand how my body 'comes and goes' with my thyroid. 
When my mother was diagnosed with Graves disease she swallowed the stuff to kill half of her thyroid and she did great, was't on any medication or anything for years. Then out of the blue, 7 years later she thought she was getting a cold and I was rushing her to the ER 2 hours later, the intubated her and MedEvaced her to the city. I am glad that I am on the other end of it, and I am glad that I am nowhere close to having it as bad as most who have hypothyroidism. I don't even consider myself hypo most times, in the winter I do because that is when I REALLY feel like I am, but I don't believe you can be hypo seasonally lol! 
I am now sleeping with two pillow under my ribs and three under my head to keep my head higher, I'm at about a 40 degree angle now and I haven't woke up feeling bad yet. I wake up with the headaches still but not like the hung over feeling.


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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 27, 2016 4:56 am

I am glad that sleeping propped is helping!
I think you need to find a better endocrinologist.
http://www.ncbi.nlm.nih.gov/pubmed/10093311
http://www.ncbi.nlm.nih.gov/pubmed/23771919
there is evidence of thyroid hormone fluctuation with the seasons.  perhaps it is not clinically important for most people.  but it sounds like it could be for you.  I suspect that if you could add a little bit of T3 in the winter, that that might do the trick.  but most endocrinologists don't believe in supplementing T3.   you may want to find a doc who does integrative medicine and bioidentical hormone management; this type of doctor would be familiar with the use of T3 and would be open to treating you as an individual.
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PostSubject: Re: New to forum and newly diagnosed   Mon Jun 27, 2016 9:11 pm

Thank you for showing me those two publications! Very interesting! I know I need a new endo, she is sweet, but not very good at treating a patient as an individual! It all comes down to my insurance, but now my insurance won't even pay for any labs to be done at my endo office, I have to go to a lab and have them drawn. That makes things harder because now I have no idea what any of my values are, the office changed everything at the beginning of 2016. I am trying to find a new endo, I would really like to find a good one, I just always have a fear of switching providers after all this stuff with the IIH. I went through three different PMP just to get someone to listen to me, I worked for a very short stent with one whom I had the upmost respect for until I started working for him. I guess it all just has me worried. I know there are many many more wonderful doctors out there, like you for instance, who really are doing what makes them tick. I'm just a scaredy cat. >^..^< AND and worry wart.(I don't know how to make one of them LOL!) @?? I am suppose to be going on vacation next week and planned on coming back and working on it when I got back, researching the doctors that are close enough for me to get to and picking from them. Living in Indiana (pardon my french) is like living in the 'butthole of America'! We don't get much, when we do, we are the very last to get it! So, trying to find anything around here that is good is like a needle in a haystack. My mother has a pretty good doctor but he doesn't except my insurance so he's out the window sadly! He's always telling my mom, tell her to pay cash....I'm like yeah, you want to give it to me to pay with??? lol! Anyway, Got to go cook dinner. I really thank you for showing me the two pubmeds! I will definitely keep them for some "nice" ammo for my doctor. (If I can't get a switch made before I am suppose to go back in December) Have a great day!


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PostSubject: Re: New to forum and newly diagnosed   Tue Jun 28, 2016 2:26 am

you should be able to get your labs from the laboratory, you just may have to go sign something.
sorry about Indiana.  it isn't much better in Vegas.  and the good docs are truly a minority, I hate to say.  but, you are not that far from Nationwide in Ohio, which is supposedly the best place in the US for kids with IIH.  they had an IIH conference there so there have got to be good adult docs for IIH there.  you may just have to travel.  I am sure there are good docs in Chicago.  if you decide to get a sleep study I would go to Northwestern or U of Chicago.  it can't be that far away.  I got on a plane and went to Stanford, and also to Dallas, for my health care.  it was absolutely worth it.
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PostSubject: Re: New to forum and newly diagnosed   Tue Jun 28, 2016 10:01 pm

Wow! I will definitely be looking into some new endocrinologists! I am very hopeful with the new neurologist! I feel like I wouldn't have been referred to him by Dr. Miller if he didn't feel he wasn't a good fit. (but you never really know until you try i guess) He said in our appt that he was sending me to him because he specializes in IIH, so fingers crossed, he's right. Smile  I will also be checking at the lab where I had them drawn for copies of my values. I wasn't aware that I could get copies, shoot I didn't know that I could have a copy of my MRI or CT until about 3 weeks ago. LOL! Thank you AGAIN!!!!! You are fantastic!


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PostSubject: Re: New to forum and newly diagnosed   Wed Jun 29, 2016 3:53 am

you're welcome!   Very Happy
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