I didnt know where to start on this forum as of now im dealing with pretty nasty decompression headaches. I Joined the Marines in 2010 age 19. Served in Afghanistan in the end on 2010-2011. Was involed in a vehicular roll over while i was a minesweeper. I remember one nasty headache i had out in the dessert but just lasted the day. since iv been back always had headaches not to sever but enough to let them know they were there. I was recently discharge in December and thought the pulsating tinnitus was from my tonsils being bad aswell as the strong random periods of nausea. Few month later i found a job and was working when i got home all of a sudden my eyes felt like i was punched behind both of them and lasted for a month with constant visits to the Veterans Affairs ER. Finally they see my optic nervs are swollen did an lp came high. cant figure out why i have it and i dont fit the profile. Im 155lbs 5 ft 9. Male and can still run 4 miles.( not as of this moment of course) but i dont know anyone with this problem theres alot of tramatic brain injurys in the Marines but none with my symtoms. Beleive it or not befor i knew what it all was drinking made it better until there was no way i could keep drinking that much for that long. love to drink but i cant do it everyday. i would think if everyone got hit in the head this would be more common. I have to turn down a job that was 100k a year. Im confined to my bed. I cant drive with out getting sick. cant bend past my waist. talking about getting a shunt.. i just turned 24. any advice on a better out look would be great if none of this message makes sence sorry it was painfull typing it.

Welcome to our support forums, I'm so glad you joined us. It is very hard to cope with the symptoms, especially when you we're fit, healthy and capable, and then find yourself having difficulty with day to day living. It's not uncommon to go through a period of anger, frustration and feeling low, and of feeling like you don't know who you are anymore. We've all been there so you're not alone if you feel like that.

The medication can make a big difference, so can adapting yourself to doing things differently. It's all trial and error. Setting yourself small goals and building up to other things will help you to get to know what your body can cope with, now you have this condition. By knowing how much you can do before the effects kick in gives you a sense of control. Some of us still maintain employment, even study so please don't feel you won't be capable of anything. It's going to take time for you to feel the benefit of the medication but hopefully you will.

Ask as many questions as you need, rant if you need to, we're all here to help and support you, and each other. We know how hard it is because we all have it.

Hey. I know that most who get this are female and over weight, but not all of them. If that was a hard fast rule then the condition would not be called idiopathic - of unknown origin. There are other men on here with it - and they are skinny and healthy. I was fit and healthy before I got this too. I served 9 years in the British Army including Iraq. And then this happens. Its a hard path to walk. but dont get hung up on 'why me' and 'i dont fit the profile'. with this disease hitting 1 in 100,000 people we all drew the unlucky straw! But i can tell you that it does get easier. you need to take it 1 day at a time in this bad stage and use your training to just keep going. there will be medication or a shunt out there that will get the pressure under control, you just have to find the right one for you. keep on at your neurologist until they get it right. 
Oh and here is a vital lesson I have learnt - civvie doctors work on a totally different scale to military - if your head hurts 6/10 you tell them it hurts 8/10 (we both know that 8/10 is people screaming on a battlefield but if you dont tell a civvie doctor that - they wont take you seriously!)
best of luck

I'm sorry to hear that you're struggling now, but for most people the initial diagnosis and treatment are the worst. Your condition can improve once they find the right treatment, so hang in there!!! I've definitely had rough patches, but have maintained full time employment for almost 10 years now. It's an adjustment and you'll have to learn your triggers/ limitations, but it's possible to lead a normal life.

I think it's interesting that alcohol helped your headaches because it's something I had to cut out..I get an instant headache with the smallest amount. I also had to stop core and weight training.. anything that caused strain or bearing down. I've even found that processed food and weather can trigger my headaches. It's all really trial and error, so you'll have to just pay attention for awhile.

You'll find that IIH affects everyone differently, which is part of the reason it's such a difficult disease to manage. It just takes time, so try to be patient. I'd suggest keeping a symptom log if you can manage it, too. It will help you identify some triggers like meds, weather, food, etc.

Look through the site and let us know if you have any questions.

Take care,
Julie

Thank you everyone for the advice. as far as symtom log.. i dont know what keeps it going or started it. im skinny. male. and its not the lack of exercise. i miss running alot cant with the headaches. and yes the Vetaran hospitals are not the best so im going to see a civilian nuroologist . my veteran doctor was treating me for rhumatoid arthritus.. shes about as usefull as a football bat. Iv been saying since day one this is what i think i have. no doctor i guess likes it when you diagnose your self and right the first time. I had to get on the doctors while i was in the military because my tonsils were bad. Almost got in alot of trouble for disrespecting a Senior Medical Officer. But hey guess what the day i got out of the military guess what the ent told me when he was pulling out my tonsils. " those were the worse things iv seen in 20 years" My iih symtoms started when i developed tonsilitus. just thought it was all from that the pulsating tinnitus and nausea. after tonsils were out ooooo i felt like a new man then not a month later. Bam! my first eye pain in both eyes.. i can take alot but that brought me down to my knees. went away in a week then a month later came back and stayed for 2 months then diagnosed with iih . had an lp . now its been 2 weeks since my lp and i cant lower my head past my waste with out yelling in pain from pressure but eye pain is gone for the most part pulating tinnitus seemes to always be in one eary but now occasionly in both... it like i got head phones on. Im hoping its from sleep apnea and it can all be fixed. I have PTSD from the war. Nasty night mares . just the phycological toll im going throu right now with an extra icecream scoop of major depression. and sprinkles of anxiety.  Im not to hot right now.

i probably repeated myself alot. Another guy i served  with in Afghanistan commited suicide the same time i was diagnosed along with my Birthday. So im More or less venting im single and pretty much alone. sorry if i didnt answer your questions

hey, is there someone you are seeing about the PTSD? loosing your buddy in that way is going to mess with your head especially if you are already struggling. And then chronic pain is a very mentally draining experience. Its one thing when you get an injury and the docs patch you up and tell you how long you will be down for and when you can get back to phys. but with this chronic pain, it is day in, day out and the hard bit is you dont know when it will end, because you havent figured out what is causing it yet or how to stop it - its like a Sgt taking you back into camp at the end of a run when you are exhausted but then they swing the squad back round and set out again at the last min and wont tell you how much longer you will be out for (lol did they do that to you? hated when they did that). Plus you cant do any of the regular stuff that you normally do to let off steam. 

Dont give up - even if you dont figure out the exact cause of the IIH, working with the neurologist you will find the meds / procedure to treat it. but in the mean time you need to have someone to talk to. You are welcome to vent on here and we understand the pain and the debilitation of IIH, and i lost a buddy in Iraq so i know a bit where you are, but sometimes you need experienced help. Are you seeing a counselor or therapist about the PTSD? getting your head in a better place will help you deal with this whole situation a lot better. its important. these things can eat away at you.

And dont be afraid to fight your corner with these Doctors now. push the sleep apnea investigation - there is a lot of research out there that says it can effect loads of conditions from IIH (it spikes the intercrainial pressure throughout the night) to depression (lack of sleep helps no-one), so if it is a problem for you then treatment is the way forward. Also you dont mention what drugs they have started you on.  my pressure from my first lumber puncture was 380mm/H2O and i have ended up on 1.5g Diamox and 100g Topamax per day - these reduce the production of cerebro spinal fluid and so lower the pressure in your head. this now eliminates 90% of all my pain from those bad old days. but we are all different, and respond differently - some need other drugs, other doses or they dont respond to drugs and need a shunt. But anyway those are the 2 most common drugs - so as a start point you need to be asking your nuero about them if you have not started on one or the other already.

Keep on talking, it will help and get on to those nueros. you have been in terrible pain long enough!

Hello JR, and    to the group!
Thank you for your service.

Please feel free to come onto the forum anytime.  And having a good rant is always welcomed.  We understand the journey of having IIH.  It can be a long process, but having the diagnosis is a huge leap forward.  Now it's working on what will help to relieve your symptoms.  Try meds first.  Then I would suggest looking into optic nerve fenestration and other less invasive surgeries.  Getting a shunt should be a last resort, only because they tend to not be problem free.  As you read around the site, you will see how others are dealing with the upheaval that IIH can have on your life, but we have many stories of successful outcomes too.  Try to remain optimisstic

Yes like those hikes with all that wieght up  those mountain. you just want to drop and make it all stop and when it seems like your almost there one more giant fucking mountain. Sitting in my room unable to even pick up somthing i dropped on the floor then when you think it might let up your eyes feel like you  were sucker punched out of nowhere. The hardest part is seeing everyone on Facebook so active and progressing in life and iv been stuck in my room. Like i said it wierd but drinking whiskey is not the best solution but it relieves me of my symtoms for a few hours. they put me on med diamox but those headaches are worse taking it feels like i have worms crawling in my feet. i dont drink on the meds doc told me to lay off for a while of the meds untill he calls me tomorrow. i saw stent procedure as oposed to shunts. doc said if i had that done its a permenent thing one they do that and hes not sure its a good thing but i read good things about it online. I just dont want my vision to go away and they start the next step is what im worryied about. Doubt i have sleep apnea but well see how is everyone elses quality of life once they found a stable way of controling iih ?

So sorry to hear that ou are suffering so much, JR.  But yes, the quality of life can improve, to near normal, for many of us IIH'ers.  Once the headaches are brought under control and the vision is stabilized, life becomes great again.  Hang in there.  It sounds like you have a knowledgable doc.  That is one less challenge.  So many of us have had to search weeks or months for that alone!  
Are you keeping a symptom and/or medication log?  Many of us have found that very helpful as a patient and to give to the docs so they can figure out what may work to get us better.

I think i might start a jornal up. i am now on extended release of diamox the one that long and starts with an A.  Al#########.. i dont know. but after taking it the clouds parted and birds were singing. i was reielved of most of my symtoms. headache here and there with mild symtoms but as soon as that buger wears of im done. take it twice a day and still trying to figure out the best time to take it so i will last from when i wake up to sleep. also noticed its hard to sleep but im sure it takes a while to adjust. not getting enough sleep in the least of my problems so if it make everything better ill take that side effect. i was driving today i was going in to the store i could pick suff up off the ground with out moaning in pain. the pulsating tinnitus was almost none existant. my gerneral mood and over all feeling was awsome. but it wore off 2 hours ago and i can feel pain in my eyes. still working out some bugs but i cant tell you how depressed i was i didnt even know it untill the pressure was reduced! so bad i thought i was crazy.  Even thou Dr. Pepper taste like turd. once i get  my dosage timing right, in a few days im going to start running agian start slow then try for 8 miles a day. you might think its alot its not as much as you think. 4 miles in the am 4 in the pm. then  with pullups and push ups get back where i was. doc said he thinks i will just go away on its own.  eventhough the pain may be great i cant stand to sit down an endure this. with this med i have a small window to help me do this. potassium and lots of water and i just planted a huge garden so now all kinds of vetables are growing. Im just jotting stuff down in no paticular order my head is killing me and i wanted let everyone know my progress.

also i know this illness is common in the over wieght community not saying that you all are. but this illness has actually caused me to loose wight im skinnyer now pants dont fit like they used to. didnt know if anyone else lost wieght from there symtoms

yes I lost 40 lb when it first hit.  SO GLAD you are feeling better with the Diamox!
a lot of docs think it will go away on it's own but I am very skeptical.  I don't know of any cases like that.  in my family we have it from birth/childhood (mild symptoms at first so we don't realize it, intermittent stuff) and it just keeps getting worse over time.  3 generations.  the docs will wait till you are feeling great and then want to stop your meds.  I say, don't fix it if it's not broken.  most people here relapse when the docs take it away.

Excellent point, Deb.  It's taking the meds that allows us to feel better and then the docs decrease or stop the meds and the symptoms come back, often even worse than before.  
JR, I used to try to keep as close to equally spaced between doses as possible.  Acetazolamide (Diamox in generic form) tends to not hang around.  It is not cummulative.  I would think something like 8 a.m., 8 p.m. would be helpful.

well i think i spoke too soon i was all happy about feeling better but now its just manageable. eye pain is  coming back but slow and now the sluggish feeling....... maybe do they make a higherdosage of ecxtented release dont know if that will fix it but well sorry about the long happy post lol kinda got too happy after months of feeling like poop. on an off note has anyone had dry skin on there forhead not rash just dry skin that lotion everyday seems to help.

You can take up to 3000-4000mg a day, but they like to increase slowly because of side effects. Bending over, bearing down, any strain like core work can increase intracranial pressure..just be mindful with activities and how you feel after.

I was doing the gym a couple hours six days a week before IIH and can only do low impact cardio without getting major symptoms now. I also can't lift anything heavy or bend over to pick things up. It's really all trial and error, so the journal may help you keep track.

I'd definitely call the doctor about changing meds. Let them know it worked at first, but seems to be wearing off. Maybe they can at least adjust your meds.

I hope you continue to find some relief..good luck JR!!!

the problem in IIH is decreased drainage of CSF into the venous system; so decreased outflow.  and probably some brain swelling, so increase in brain parenchyma pressure.  Diamox decreases inflow.  so it's not completely intuitive to me, it doesn't seem to be a direct effect on the cause of IIH, and so I think that's why it doesn't always work that well for some.  if you are tolerating the side effects you can push the dose up.  it may be that your system adapts to it, so that the same dose that worked a few days ago isn't working as well now.  Lasix works synergistically with Diamox, so that is something to ask about if the Diamox isn't cutting it completely.

Hey JR - the way diamox worked for me is that every time we went up a step on the dose i felt great for a week or 10 days then the symptoms started to come back and i felt bad again. I equate this to how you react after having a lumber puncture - you feel great when the fluid drops then your body compensates and the pressure begins to rise again. but once you reach the right level of drug to totally control your pressure then you will be fine - if you can handle the side effects at that level (for me this was 1.5g diamox and 100g topamax but everyone is different ) and so when you hit the right level and pass 2 weeks feeling good you know you are probably safe lol.
so go back to your neuro and get them to increase your acetazolamide (diamox)  - dont try and be brave about it, once you feel you have passed the 'honeymoon' period and you r feeling bad again go back and step it up untill you hit the right level.

Its been a crazy few months with all kinds of ups and downs. i go see a civilian nuro tomorrow aswell as follow up with my veteran doc. i probably do need a kick up on the dosage what i have now im better than i was but not enough to get out or work. the side effects are just tingling in toes and fingers for me sometimes my nose will go numb and i can flick it and my face feels funny numb. I really appreciate everyones input i really do. just reading my own post id think  im crazy too. I think part of the battle is accepting it. I got ahold of Austin - pleasehelp 29 i think it was hes same age same body size but i never herd back from him. i noticed when i look up alot of these question about iih alot of infromation comes from the UK, not so much USA. Does anyone ever notice with the meds that you intrest in certain things go down. It could just be me but if it was deer season right now normally you would have to drag me out of the woods or season ended now i just kind feel .. meh? or maybe i just need to buy a dog there cheaper than a girlfriend.

It's a long slog with this condition and the getting used to the changes from the condition itself, to the side effects of medication are the ones that take the longest. You sort of go through a period of loss of interest because you feel like you've lost a lot of who you were, and become frustrated and angry that your body has turned on you and changed you. Then you can't seem to get to grip with who you are now because you feel you have lost the identity you had, and the person you knew you were, if that makes sense. It's like a mourning period for a while. We all go through it, and the loss of interest in things you enjoyed before, is partly down to these things, and a self doubt that you can still do them. I'm sure given time when you are back on an even keel you will realise that you are still the same person, but with a few tweaks here and there, to do things differently because of your IIH. It's all a trial and error thing and we are all different with different motivations and attitudes.

I was a keen hobby artist and reader, and gave that up for a long time, because I felt I couldn't continue with tingling fingers, and not able to focus, but eventually, I realised the only thing holding me back was me, and I reminded myself constantly that this illness didn't define or dictate who I was. 

Please never feel that you are alone or isolated, I know we can't imagine how hard it is for you being a soldier and having to give it up, but we do know what it's like to live with this and we will always support you and, help you to get back to being as close to the person you have always been as best we can.

Hi there.  How did you get on with the doctors today?  I hope they were able to come up with some new ideas for you.

How did it go, Jr?  Hopefully encouraging news?

went to the civilian nuro and i like him better than the veterans affairs neurologist. He thinks that i may have two blood vessels / nerves in my head touching causing it or mini tumors witch he highly doubts im trying to remember what he said exactly, but he wants me to get a the disks of all my head imaging and send it to him for his review guy seems to really know what hes talking about as my pressure was kinda high on the tap but not substantial he thinks there might be a simple underlying cause but he wants to explore all options. i told him before this i could still run 8 miles if i wanted to i can still run now when the symtoms are not as bad. My symtoms are kinda funny as spinal tap made them way worse weeks after. but i respond to diomox so we decieded to up my dosage i took two extended release pills tonight and i was able to help my dad put up a fence ill just make up somthing to the va when i get a refill. The va was verry adimit about NOT looking at my eyes to make sure my optic nerve wasnt getting worse, i just wanted a simple check see if they seem better but i would just get the run around. the civilian nuro had no trouble in taking a look and my left eye is still bad but no vision loss and right is barly swollen. I didnt ask about sleep study or anything yet and i doubt my testosterone level is low..... ( lets just say im a 24 year old male and and decrease could do me some good) im going to let this doc take a look at my files and see what he says and bring up a sleep study later next appt. right now i just have eye pain on a 4 right now manage able staying busy helps forget it a bit. but the extra pill sure helps with the headaches and wooshing in my ears hopfully it stays like this. doc is really sceptical on how I got it. i know there are a few out there like me but he says its extremly rare and thinking somthing could be causing it. what he told me were simple fixes for what he thinks it might be but if it by chance is iih. might be good thing to get the holes punched in my optic nerve to prevent blindness. take away my eye pain as of this moment id be golden. but well see and thank youevery one who is following up on me i really do appreciate it

By the way when i was building the fence my foot slipped off the clutch of my tractor and went forward pulling the whole fence down  :shock:

Great update, JR.  Sounds like this Neurologist is a real keeper.  And the action plan sounds very reasonable.  This is excellent.  And the Diamox ER is a good choice.  Definitly lasts longer than the regular ones. 

 :well done  :well done  

I'm glad to hear you at least have a doctor that's listening and checking into other options. Just remember not everyone's pressure is the same or even falls on their scale, so don't let them talk you out of IIH diagnosis just because you're not the norm..no one is! The symptoms and relief of those symptoms with spinal tap or treatment suggest your pressure is too high for you..they may be able to find a primary cause, but don't let them talk you out of it if you're finding relief.

Keep us posted on your progress!