I'm new to this site, and I'm very hopeful and optimistic that I can find some answers and support from fellow IIH sufferers here.  

I've been operated on 16 times and yet have not gotten any relief. These photo collages will give you an idea of what I've gone through the past 3 years.




I am a pre-med student that has had to withdraw from college and almost all other activities because of the chronic pain I've endured over the last 3 years. The pain is unrelenting and has brought my life to a screeching halt. 

The pain I experience is a non-stop, bilateral, dull, aching soreness in my eyes and in my forehead. It is not throbbing, or sharp, or pulsating. It is a static, steady ache. When different specialists have asked me about my "headaches" I always respond that I don't have "headaches". Rather, I've had one long continuous headache that has lasted 3 years.

Despite the hardship I've endured, I remain cautiously optimistic and I hope and pray that by publishing my information on the web, I can find the person who has the answer to my condition. My gut tells me that the answer could be something very simple.

I know that much of the time the answer to a 'medical mystery' can be found in the community rather than in a doctor's office. That is why I am reaching out to anyone online (not just medical professionals) who may have a suggestion, idea, or recommendation.

I'm searching for answers:

Are there other people like me?
Are there treatment options that could reduce or eliminate my pain?
Is there reason to believe this pain could go away someday?



I reside in Texas and I've traveled all over America to see many excellent physicians across the various specialties who have done careful evaluations. Unfortunately, despite all of these efforts, my diagnosis (IIH) remains in doubt by many and none of the medical or surgical treatments have alleviated the pain I experience.



this is truly a "medical mystery" and I'd be so sincerely grateful for any kind of helpful suggestion, recommendation, or referral.

Best wishes to all of you as you battle IIH

Welcome to the group! I know that everyone responds to IIH differently, but one common thread for the majority is we find relief after spinal taps. I assume that you've had some and just wonder if they provided any relief?? There are also several medications, optic nerve sheathing, stents, lumbar and ventricular shunts. What have they tried?

The other side of this is IIH makes us susceptible to other types of headaches. You could be having rebound headaches from caffeine or over-the-counter meds, migraines, etc. Is someone monitoring your IIH or checking your vision on a regular basis?? I would suggest keeping a symptom log to help you track any patterns or changes.

I encourage you to check out the site..I'm sure you'll find that most of us are medical mysteries, so although your situation is unique you are not alone. Just hang in there and let us know if you have any further questions or concerns.

Julie

Julie, for your thoughtful response. It's so encouraging to connect with fellow sufferers.

I've had 4 spinal taps which all showed elevated CSF pressures. None of the taps gave me any relief. I also had LP shunt surgery 2 years ago to bring the pressure down to normal range. However, now that the CSF pressure is low (the pressure has been checked multiple times since the surgery) my symptoms have not decreased. This is the greatest mystery to us.

I've been to the opthalmologist dozens of times to have routine visual field exams. Thank God I have not experienced any vision loss.

I don't drink any caffeine and I'm on zero medication right now (despite being in pain).

I wonder if there are any men on this site that have IIH, especially young men? I'm 22 and I have found that young males are very rarely are diagnosed with IIH.

also, do you happen to know of any success stories where an IIH sufferer completely recovered? I just would like to know if there is hope for someone like me. I can't imagine being in constant pain for an indefinite period of time.

again for your thoughtful and sincere response and I'm so glad to have found this site

all the best,
Austin

Hello Austin and a very warm welcome to the Group forums. I'm so glad you found us and you're definitely in the right place. I know it must be very hard for you right now, I was 20 when first diagnosed, when you're at an age when you want to be out doing things, and having a good social life with friends. I want you to know that we are going to help you to cope and live with IIH, so that you can have a decent quality of life.We are all here to support you, even when you want to have a good rant. We all understand and your being male doesn't make a difference because the symptoms are the same for us all.
We do have a young male your age with IIH, and here is the link to his introduction Gavin diagnosed April 2012 you could PM him and connect with him and he is also on twitter @GavH88

Hi there and welcome to the group

Now I know im not the most active member on here, but you have found the best group of people to help you through this now, and it kind of looks like you stumbled into this like me. Being male myself and around the same age I think we have a good link. I know about the constant stigma by doctors, doubting that you have it 'because you are male' and I know how it can affect studies as I have had to put my degree on hold for the past year...though I am about to try again.

Keeping a log of your symptoms is a good thing, I have had headaches constantly for 4 years and weirdly the thing that finally got something going for me was a simple trip to the optician. After that things snowballed although again I am hitting walls again with medical staff. But keeping that log helped me to go through the symptoms each time. I dont know about you but I have seen so many people I have eventually got to the stage where I forgot some of the symptoms.

Another thing is your friends and family, I know that sounds weird but having that support at home and around you is great, and really helped me to get through some very serious bouts of depression. Get your friends to look up iih, or send them some links. I know how a social life can almost become nothing with this but having those mates that will still understand and include you is worth so much.

Im on twitter a lot more but I do come on here sometimes...look me up if you havent already @GavH88.

Again welcome to the group, if you have any questions about this this site and twitter feed is the way to go, and you can always tweet direct to me if you want . And dont worry...(believe me that was a big problem for me)...you arent the only one, you arent the only male...and youve found the greatest resource on the net about this.

Chin up, think positive and never give up with trying to find out what is going on. :Good Luck

Best wishes, hope to hear from you soon.
Gav.

Austin, Gav, Mark and Vernor,
Because IIH in men is even more rare than it is for women, I so hope you guys will find a comradeship that being members of such an exclusive group affords. Thanks for being here.

Absolutely! I have gotten so much out of being a member of this forum. While I realize that there are few men with IIH, the issues are pretty much the same as those faced by the women who have this disease. I am working on a post that will be an update on what I have learned and what I have found that works/doesn't work for me. Hopefully, we can keep comparing notes and find some common ground that will help us achieve remission or at least make IIH easier to bear.
For the men, the two things I have seen that seem to be commonly mentioned in papers is low testosterone (my testosterone crashed right before I became symptomatic) and a tendency to present with more eye-related issues. In fact, at least one study indicated that men have at least twice as much chance of losing vision as women. So far, I do not have paps and have normal visual fields; but my eyes are always sore and painful to move. I do regular checkups with the ophthalmologist, though, as vision loss can occur at any point in the disease. Just my two cents...

Anyway, I am always up for sharing ideas and lending an ear if you just want to vent. Feel free to PM me as well.

Mark

Austin, have they mentioned the possiblity of low pressure symptoms or overdraining? I also have a lumbar shunt and had daily pain for over 3 years. They would do a spinal tap..my pressure would be normal and my symptoms would get worse. They kept telling me the shunt was functioning well and used opening pressure as proof. I always felt worse as the day went on and got relief when I laid down. I tried every med available, botox injections, acupuncture, you name it..nothing helped. I finally saw a pain specialist who said "your shunt is overdraining when you're up"..how completely random! He sent me to a headache specialist at Cleveland Clinic who agreed and sent me to one of their neuro-surgeons. He told me they don't even use spinal taps anymore because the results are inconclusive. They only go by your symptoms..my symptoms improved when laying down, so shunt must be overdraining. They did surgery and found that my valve was open, so fluid draining out any time I was upright..apparently it's common, but even the "specialists" here were telling me I was fine. I still need an occasional adjustment, but the daily symptoms have improved so much I almost feel normal.

If any of this seems familiar, I would encourage you talk to your neuro-surgeon about the possiblities.

Medmisfit, for sharing your story with me. I can say that I know full well what living in daily unrelenting pain is like.

It sounds like from what you said that you definitely were having low pressure symptoms (lying down makes symptoms better). I've had low pressure symptoms after lumbar punctures (naturally) but those symptoms would go away after about 24 hours.

Unfortunately, my daily ongoing pain is not positional which means no matter what position my body is in, the pain is the same. I've had the doctor check the csf pressure recently with a butterfly needle and the pressure is normal.

Gav, it's so encouraging to meet people that are going the the same trials! Meeting males with IIH is tough, but finding someone who is so close to my age is unbelievable! It's a pleasure to meet you

I have a few questions if you don't mind.

Has eye soreness been a predominate symptom for you? My eyes are sore and achy 24/7 and I find it very difficult to read or do any strenuous activity with my eyes. That's why I'm not at school.

also, has weight played any significant role in your symptoms? I have always been thin and athletic and I was working out hard playing varsity baseball when my symptoms started. For 3 years I never made any effort to lose weight, but just recently I got a terrible stomach bug and had no appetite for weeks. I dropped 30 pounds (again, I was not overweight) and the crazy thing is that my pain has decreased about 30-40 percent! I no longer have to take the analgesics that I used to.

I know that weight loss is recommended to anyone with IIH...but the doctors never said that I should try and lose weight. Now I'm skin and bones, and I'm maintaining this weight by eating only fruits and vegetables. I've lost a lot of of muscle mass but I'm not a body builder and it has reduced my symptoms so I'm happy!

you mentioned friends and family and I'm blessed to have the most wonderful, loving, supportive family you could ask for. I'm also blessed in that my father is a physician and my mother is a registered nurse! Of course, they feel terrible that they haven't been able to "figure out" why I'm still in so much daily pain. But counting my blessings is something I do often.

I look forward to hearing from you again Gav

-Austin

One thing I'd like to share with those here.

If this helps any of your symptoms, even slightly, then it would be worth posting.

I have found that ice baths have been tremendously therapeutic for me. This may sounds crazy and uncomfortable (it kind of is) but let me tell me you what my experience has been.

The second I submerge into the bath I feel my headache and the acheing in my eyes steadily decrease. I don't have my head submerged, only the rest of my body. You would think that I would have to submerge my head to get relief...but that's not the case. About one minute into an ice bath I start to feel these "chills" that are like tingling sensations that start in my head and then travel down my spine (like a chill you get when you have goosebumps). With each "chill" I feel the headache and eye pain lessen. I get these chills every 30 seconds or so as I continue to soak in the ice for the full 10 minutes. Another thing worth noting is that the relief from the ice bath lasts for at least 2 hours after I'm out of the tub. If I turn on the hot shower to warm my body after the bath, this does not negate the pain relief from the bath. 

now, before I ever take pain medication, I get in the ice bath for a full 10 minutes. The ice bath also has an 'elephant tranquilizer' affect at night. If I take an ice bath before bed, I fall asleep in 2 minutes. Don't know why this is, it's just what I've experienced.

I would LOVE to know whether this therapy helps anyone here. If you need inspiration for braving the cold I recommend watching the video "lewis pugh swims the north pole" (on youtube)

please let me know if it helps any of you!

-Austin

Sounds interesting, but I'm too much of a wimp to try that no matter how much pain I'm in, however i have tried the other end of the scale, when i've had really bad aching neck and shoulder pain coupled with headache i've got in a really hot shower and that has dampened the pain down for me. However it doesn't last as long as two hours, only minutes but long enough to get relief to get to sleep.

Austin,

I wonder if the ice baths have something to do with your venous pressures. Instead of submerging, try an ice pack just around your neck and see if you get the same effect. Like Jo, I have found that heat helps my eyes a lot. Eye pain/ pressure/soreness/visual auras are my worst symptoms and I've found that sitting in a steam room helps me. I know that seems counter intuitive for high csf pressure but it doesn't give me a headache but relieves the eye stuff

Mark

hi Austin;
I've been emailing with your dad and asked him to pass on a paper to you. they don't like me to post any links here. but anyway, the initial physiologic response to cold water immersion is hyperventilation. this can decrease ICP, and might be the mechanism behind why the ice baths work. also, the ice water will cool the CSF in your spinal column, which will circulate back into your brain even though your head is not submerged. this might shrink the CSF compartment and lower ICP.

I, like others, have found I feel better after a hot shower. I suspect this decreases cerebral blood flow by vasodilating the peripheral vessels, and in this way can decrease ICP. I don't think I can do the ice water trick either!

Deb

Mark, that's a great comment and I have wondered the same thing. I tried putting the ice on my neck and back only but I just couldn't reproduce the effect of the ice bath. I guess the ice bath has some kind of physiologic affect on the nerves or blood vessels.

Deb, it's so nice to officially meet you and my father has spoken to me about his correspondence with you. Yes, you are spot on about the hyperventilation. My first few dozen times in the ice bath I would gasp and hyperventilate pretty dramatically. Now, it's as if my body has adjusted to the shock and I no longer hyperventilate. Now, when I submerge, I slow my breathing. The longer I soak in the ice, the more my breathing slows, and the more the color drains from my skin. The vasoconstriction effect of the ice is very visible (I have large veins in my arms that I watch shrink to where I can't see them)

your thought that the ice water cools the CSF in the spinal column is a very interesting idea. I never would have thought of that, but it makes sense considering that it takes several minutes for me to get the major relief from the ice. I suppose the fluid would need time to travel into my head to shrink the compartments.

What a blessing to have another medical doctor (besides my wonderful father) to talk to about IIH!

I don't blame you if the ice is a bit too much. When I tried the ice the first time it seemed like a crazy experiment...but when you're in terrible pain you're willing to try anything to ease the suffering. I feel very fortunate to have "stumbled upon" this therapy because it's literally more effective than any pain medication I've taken. It's just freezing cold...

sincerely,
Austin

hi Austin;
it's nice to meet you too! you are very lucky to have your dad helping out, it seems like he's done a great job sorting all the issues out and getting you to the best doctors in the country.

I definitely understand the willingness to try anything to ease the suffering. I've done some crazy things trying to sort out my issues and see what might help. but I just know from my backpacking days that even if I wanted to, I just could not get into water that cold. my body would just shut down. I've been in some pretty cold water, but if there's ice/snow in it, forget it. you are a polar bear! whatever gave you the idea to try this?

Deb

he truly is incredible and really my whole family has been so loving and supportive. I remind myself to count my blessings daily.

a friend of mine told me about the wonders of "hydrotherapy" and that it would really be worth a shot. Hydrotherapy is where you alternate from very hot water to very cold water. I thought that if extremely hot water helps my pain, maybe extremely cold water would be worth a try.

well I wouldn't say that I'm a polar bear, because after my first ice bath when I got out it took me a solid hour to stop the seizure-like shaking and teeth chattering. I had to do 3 or 4 cold water baths before I could eventually build up to the full blown 10 minute ice baths where I put a whole bag of ice in the tub. I was actually surprised at how quickly my body became accustomed to the cold.

there would be times when I couldn't muster up the courage to brave the cold, but I needed to do the ice bath to get pain relief. In these times, I would turn on my man vs. wild greenland episode and watch bear grylls.

I'm sure the image of me shivering in the tub with bear grylls playing on my laptop will add a smile to your day

but seriously, there is something important that happens during the ice bath I forgot to mention.

first let me tell you (unless my dad has told you already) that I have a sensation of fullness or pressure in my ears all the time. It's not pain, ringing, or whooshing, It's just a feeling like when you're in an airplane and you feel like you have to 'pop' your ears or normalize the sensation of pressure in your eustacian tubes. The sensation can also be compared to when you dive down in deep water and feel the pressure build in your ears.

one of the things that startled me the most when soaking in the ice water was that about 3 or 4 minutes into the bath I noticed the sensation of fullness in my ears significantly lessened. Every single time I soak in the ice, I notice this phenomenon. But again, I have to soak for 3 or 4 minutes before this takes place.

I don't know what this means and I wonder if you have any idea what this could be? I've asked my father about it and he doesn't know what this is, and he's going to ask an ENT about it.

The sensation of fullness in my ears has been one of those strange symptoms that we can't explain. I know that whooshing in the ears is common with IIH patients but I don't feel 'whooshing' that goes with my pulse. I just feel a constant pressure in my eustacian tubes.

the only thing that makes the sensation of pressure increase is vigorous exercise. This has been a consistent finding. The only thing that has made the pressure decrease is the ice bath.

what do you think?

-Austin

hi Austin;
I suspect that this pressure feeling in your ears is just the way you feel your ICP. just as I think the pain in your eyes is the same. pressure in the brain comes out of the skull through the orbits, and through the foramen magnum. sometimes when I have been triggered, I can feel the first sign of my ICP increasing as pressure in my sinuses. I am sure it is just where I feel it, as the sinuses are so close to the brain, based on how my neural pathways are set up. you feel it in your ears. there is a sinus just below the ears, the mastoid, so maybe it is a referred sensation from the mastoid? and so, the ice bath must be reducing your ICP, and exercise is well known to increase ICP in those with IIH; caused by increases in blood pressure as well as the valsalva effect from grunting. never hold your breath! have you discovered the valsalva triggers? I didn't realize it until I knew I had IIH, that these were triggers. I just knew that crying was toxic for me and I couldn't read my kids a bedtime story. any type of voice projection will do it.
high blood pressure has been shown to increase ICP in the presence of a disrupted blood brain barrier.

the ENT probably knows nothing about these things. it's the little things that docs don't think about, until they experience them first hand. I think in some ways I understand this illness better than my neuro because I know the physiology and as I experience the illness it all becomes crystal clear.

Deb

Austin, how are you? Anything new to report? Feeling any better?