Hi Lauren,

I just wanted you to know I will be praying for you and I hope you find some relief.

I know how hard it can be to have a constant headache, I was fortunate that mine stopped after 3 months. I cannot imagine having one for over a year, I'm so terribly sorry you're going through this. You will be in my thoughts.

Well wishes,
Amethyst

A couple of months ago I met with a neuropsych to see if there was anything (tension, stress, anxiety) causing the never ending head pain. He asked me a point blank question - are you depressed - and I told him I didn't think so, I rattled off "normal" depression questions and answers. After this he simply stopped me and made a point I will never forget. While this is dramatic, if you can follow the winding bunny trail with me it really does make sense - research has found that people who spend time in concentration camps, or held hostage, there are those who do not crack for many months. Eventually though, with continued pressure and stress, they may suddenly tell all they know. Why did this not happen at first? Because a weakened resolve, facing certain death, knowing they will never go free wears on the body and the mind.

I don't know of anyone who is completely content who also experiences pain that never stops. IIH is not a deadly disease, though it may seem that way. But even the most optimistic person will begin to have doubts after awhile. I encourage you, even while knowing we are here to support you, find someone you are close to and be accountable to them. This could be a friend, significant other, pastor, or even a counselor. But ask them to speak up if/when they have concerns. This fight is not a short sprint - instead a marathon.

Sorry so long,
Kristena

just so you know I have read studies that LP didn't help but the shunt did. I am praying the weight loss helps me....I have headaches but mine is the dizzy spells and nausea that is just getting me down. praying for you

Lauren2,

Ordinarily I would refrain from doing so, but since you say you are at your wits end, and remember, this is only a theory (nitric oxide overproduction), and it may be pertinent to you or it may not, but you could ask your doctor is there is any medical reason for you not to try L-lysine, even for just a week. If no contradiction, then you could try it.

From the University of Maryland, a brief overview, but I only take 500 mg. per day:
http://umm.edu/health/medical/altmed/supplement/lysine

If you check for the thread on nitric oxide on this forum, you can read a little more about the theory. After a ton of research, I hit upon this and now take lysine daily. It has taken the edge off and I am able to sleep better and stay in a more horizontal position during sleep longer (still use 2 pillows, etc.). However, due to a really bad epidural experience, I will not allow a LP, thus no official diagnosis of IIH. However, I have now had a continuous headache for over 2 years, and only since I added the lysine did I finally think it was livable. Dietary changes helped plenty, but the lysine has changed my life.

If you wish to make dietary changes at the same time, great. However, if not, I think that if the lysine alone would help, and you will know it within a week and can then make other changes. Try to take nothing for pain in the meantime if possible, but certainly stay on your prescribed medications.

If you have a health food store nearby, they should have L-lysine, or you could get in in soon via amazon.

Let me know if I can help.

Antiquerose,

That's interesting, I'm excited to read more about it. I've only ever used l-lysine on my cat for his feline herpes (while on that note, it clears up his symptoms in just a couple of days).

-Amethyst

Hi Lauren,
Could it be time to start looking at other healgh issues with the IH, Ichave several at once and it took my a very long time deciphering what symptom belonged to which health issue and what to do about it.
I know you have lost a huge amount of weight, and please dont get impatient with me but what are you eating and drinking. Even though im in remission from IH but let me eat the wrong thing, HA from hell.

Forgive typos, im always mobile and this swype hates me

Mary1973 - As far as I know I don't really have any other health issues at the moment. I had a full physical about 2 months ago and all my blood work and everything came back perfectly normal. I have been eating very healthy ever since my diagnoses as they strongly stressed weight loss was key (not that I was eating terribly bad before, I was thin my entire life until I injured my achilles tendon and that resulted in my weight increase). I only drink water with lemon in it now and for food I stay away from junk food and eat lots of salads, chicken, yogurt, fruits, etc. It has been pretty easy to eat lower calorie because I am nauseous a lot of the time from the headaches so I am just not that hungry.

Thanks Lauren! I tend to agree with Nurse about the Lysine. What could it hurt, btw, I remember some older members that were dosed similar to you, but with lower dosed meds the relentless HA finally broke and became less. It was the removal of the topamax, it was causing the HA, I hope im remembering correctly it was the combo of Lasix and Topomax. Maybe asking Dr to titrate you? Im not a med person, but that is what I would do, to me with all the positive changes you made why are they not investigating the type of HA you have? Can you explain its location?

http://www.ehealthme.com/drug-interactions/topamax-and-lasix

Hey look here, some people may not think this info is dependable, I say fooey because it's the patients perspective

hi i'm sorry you are in so much pain. i cringe at the thought of that agony. after attempts at numerous meds the only thing that has worked for my head pain has been Nurontin. this medication has been a wonder drug for me. wishing you well. and hope you find what works for you. keep fighting. you deserve relief.

go with your gut feeling, also know that vitamin D is important and is needed by the body for over 400 processes in the body. I am now taking vitamin D and B12 due to deficiencies. Praying it will help :D

So sorry, Lauren. What a rough year. Chronic headache is so draining. Good for you for covering the bases with weight loss, meds, shunt research, etc.

I am not terribly knowledgeable about shunts, but have you heard of/looked into this type? http://www.dailystrength.org/c/Psuedotumor-Cerebri/forum/18662147-new-shunting-technique

Have you considered meeting with a pain management specialist, or a cognitive behavioral therapist? While the cause of your pain is very much physical, sometimes there are cognitive techniques you can use to cope with the pain better. And just having the emotional support from a professional who is knowledgeable about the stresses of chronic illness may help a little.

I know what you mean about the doctors. With this illness in particular, it is hard to feel like you are in good hands, and that your doctor has got it covered. It's anxiety producing to feel like no one is on it but you and you don't know what to do. I find it I can make a plan that helps a ton, even if the plan is just a) research other shunts b) call dr about meds c) find counselor. Having a plan means I don't have to keep worrying about what's going to happen. Just my thoughts. Hang in there.

Thank you so much for all of your responses. I will for sure look into L-lysine and other recommendations. It is just becoming so frustrating that I have basically had to become my own doctor!

For a while I was thinking that my headaches were more tension headaches and not pressure related, but my neurologist disagreed and would not treat it as such. I feel like I have multiple headaches going on at once. The CONSTANT pain that I have had for over a year is behind my ears and it is a sharp burning/stinging pressure feeling. It is on both sides but is significantly worse on my right.

When I was first diagnosed I also had a tight headband feeling across my forehead and middle of my head. I would check my head because it literally felt like I had something sitting on top of me. Now this headache comes and goes and I do believe that this is related to pressure but this feeling isn't constant.

My headaches have always been worse AT NIGHT which I know is the opposite of most of you, and they are not effected by lying down. They are made worse though when I lean forward and I feel like I can feel the fluid or pressure or something moving about in my head and it makes my head hurt more. That, the pulsating in my ear, the fact that I constantly see flashing lights still, and I still have signs of papilledema are why the dr's are convinced it is ALL related to pressure, so I am kind of stuck are their mercy unfortunately.