_{Diamox and asking my Op-Neuro for Pain meds
Diamox and pain relief}

Hi, I have been officially diagnosed for almost three months now, I take only 500mg of Diamox twice a day. The tingling in my feet are horrible, and my hands, not to mention the spider web feelings on my face when I wake up from sleeping (considering im scared of spiders!! eeek!)

Over all I really dont like the medication. My condition isnt getting any better with it. I frequently have "episodes" of my eyes going black, deaf, and losing my ability to function for a minute, then to not even count the hours it takes me to become fully concious of everything around me and the even sharper pain in my head to go away.

I constantly have pain my head, for the past week and a half Ive been nauseous to the extreme. To the point where I am drinking Pepto every hour or couple hours to not get sick.

I think asking my doctor for anti nausea medication wont be a problem. Ive never asked a doctor for pain meds, theyve always told me to take ibp or naproxen... well truth is I have never told them that I always end up taking around 3200mg a day (ridiculous) and the pain doesnt go away.. I even try alternating them.

A couple weeks ago I had some higher than normal pressure/pain... and my girlfriend gave me one of her vicodin... it seemed to put me to sleep and when i woke up it felt like all the pressure was gone! for like a full day...

How do I appropriately ask my neuro-op doc for pain meds that isnt just the ibp that ISNT working at all and probably just killing my liver and kidneys... is pain medication a normal need for IIH?

Hello! I also take Diamox and am not happy with it but they think my case is deterioating to fast to risk switching medications , they would rather just shunt me. I also get the pins/needless and numbness in my fingers tips and toes. So can sympathise.

I would make it very clear to your neurlogist that Ibp isn't doing it for you. In the Uk we have a drug called Tramadol. I take 100mg 3 times a day when the pain is really bad and this is helpful. I also take Codoamol 30/500's and several doctors have recommended it to me . You may find the ibp will work better if you alternate it like I do . For example at 8am I will take the co-codamol and then at 11pm I will take 2 neurofen ect and it tops up the pain relief.

Hope you get some help soon

Jess x

I too take pain relief but mine is staggered through the day so that it keeps on top of the pain. I take several pain medications although not all for the IIH, they do help it, especially as I take it at different intervals through the day. I also have top up medication so my pain is controlled. It could be that you may need a combination of pain medication that is taken at different times through the day to control your pain, and it is well worth asking your Doctor if it is possible for him to be able to do that with precribed pain medication, to see if that makes a difference to you.

It is unfortunately trial and error getting it right so do discuss it thoroughly with your Doctor.

Heidi

I am taking 1000mg of Diamox twice a day and my pain is still awful. I feel like I am going crazy. I was increased to this does from 500mg twice a day on April 16th. It is just not helping and I don't know what to do. I have read horror story after horror story about the invasive procedures used to treat IIH with none really being a true fix. I just don't know what to do. I can even tolerate the pins and needles if the pain would just go away. I hope he has some promising news when I see him on Friday. I haven't worked since late March and am in no condition to return at this point and am so concerned about the day to day living expenses. I feel like I am going crazy.

I am so sorry to hear that things are not going well for you, Relli3131. I wish that I didn't have to be so bluntly honest, but that is simply how I am. There is no 'true fix' to this, as of yet. There are treatments, that are faulty even at their best, medications that you build tolerance to/resistance of. But there's no cure. -smiles softly- and that is why we are here. To help you learn and understand, and for you to have a place where you can rant, and not feel so overwhelmed. A place you can come, and not feel alone because we're all in the same shoes. Some days are good, and some days are bad - but every day is beautiful as long as you look at the things that make being strong well worth it.

What I think you should do - is tell your physician, straight out, how you feel. Be honest about every aspect. The costs, the pain, the symptoms, being off work. Maybe it is time to consider the merits of filing for disability.

I do hope that your doctor tells you something good! Please, keep us informed!

<3 - hunterofangels/Crissy

Crissy,

Please know that I was not being sarcastic with my post. I am very happy for all that have been able to function fully despite this debilitating illness. I am just having a little pity part here as I vent my frustrations with just feeling terrible all of the time. I really think it is taking a mental toll on me. I plan to have a very frank discussion with my doctor. I will write down as many questions and concerns that I can come up with because if I don't I am sure to forget half of what I want to say.

I pray that I will be able to come back some day in the near future with some kind of success story.

Thank you and everyone who has shared what they are going though, the good, the bad and the ugly. Aside from these groups, I feel pretty much alone in dealing with this because no one can relate to the pain that I am since to them I look fine. ARGGG!!!!! I get so tired of hearing that. Instead of it being any kind of complement, it just makes me want to cry since they just have no idea no matter how hard I try to explain.

I finally caved in and took a Lortab and now am going to try and get some rest. I will keep you all posted. Thanks again.

Relli,

I don't believe you were at all being sarcastic. I just sometimes apologize for myself ahead of times. I have found that occasionally, without intending to, I offend someone. Most of the time, it's because I am very frank, and I don't try to dance around how things are. I think - this disease makes it like that for a lot of us, actually. We can't be subtle about something that is so 'in our faces'. I actually posted to you on the tail of doing a journal post for myself. It was "You never know how strong you are until you have nothing left to be, but strong." Which is very truthful - in many ways. We go through so much. Pain, Disappointment, Depression, Anger, Guilt... we all cycle through grief. The main thing for all of us [even myself] is to remember, the things in life that we have to be strong for : Ourselves, our family and loved ones, our friends.... No matter how bad things get, as long as we can stand, mentally and/or physically - we can be strong.

A site that might help you: http://www.butyoudontlooksick.com/
it features this: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
http://www.butyoudontlooksick.com/articles/spoon-lady-speaks/what-to-do-or-say-when-mistreated/

I think it may help you some, in explaining, and how to work with others that don't understand.

My thoughts are with you, get some rest!

<3 - hunterofangels/Crissy

hi

I have been on 3000mg a day of diamox but fortunately don't take it any more as have a shunt

it is a diaretic not a pain killer. it is used to treat a range of illnesses from glucoma to mountian sickness. it is also recommended that you keep well hydrated while taking it to prevent headaches :shock:

It has loads of side effects tingling, confusion, drowsiness the one i haved the most was the changing the taste to fizzy drinks - i couldn't stand diet coke any more.

it is the nicest one out of a bad bunch I can asure you I have been on most of them topiratmate is horrid ... pain killer wise avoid codine it makes headace worse (did for me anyway) and stagger pain killers. you can take ibroprofen and paracetamol together so take them so that they overlap so by a few hours so that there is always stuff in your system.

tramacet sends me to sleep .... when I got really bad my GP would give me Oramorph (morphine)

I am not medically trained but this is my exprience. good luck


p.s the spoons theory is a good one I have use it xxxx

Has the shunt proven helpful in controlling your pain. I just really need my pain controlled so that I can begin to function again. I am going to the doctor tomorrow and will see what he has to see but I plan to be frank about how absolutely miserable I've been. The side effects from the Diamox have been minimal compared to the pain.

Wow, you were up to 3000mg a day? Was it at all helpful? I really want to exhaust all non invasive options before considering anything else.

With my history of recurrent viral meningitis, I am reluctant to have any spine/brain surgeries. I don'r know what will happen or if it will trigger a recurrence... Grrrr!!! ok rant over for now.

the shunt was the best thing that ever happened to me... you don't realise how crap you feel until it stops because you just get on with life the best you can don't you .... but I have had 3 shunt a 2 have gone wrong so they are not plain sailing ( I am currently waiting for my present one to be fixed)... but I also know what I can feel like when I am in remission so that is what keeps me going x

I total understand as as I expect most people on the forum do just because you look normal and nothing is 'hanging off' or in a plaster cast no-one thinks there is anything wrong with you xxxxx so they don't give you the time of day

in my exprience diamox did nothing for me that is why I had the Shunt - as I said it is a diaretic - it supposidly reduces CSF fluid up to 57% - all my L. puntures we over 50 and at times I would explode over the top of the tube that they were measuing the pressure with!! even when I was on such a high dose

TOP TIPS (my experience - NOT MEDICALLY TRAINED but have helped me)
-Paracemamol is the one of the best painkillers
-codine - makes headaches worse
-Ibroprofen is an anti inflamatory - seemed to work the best - (overlap painkillers by a few hours)
-high pressure headaches are worse if you lay down - sleep as raised up with more pillows if you can -
-Diamox - must drink LOTS AND LOTS of fluid as it CAUSES HEADACHES and make your blood acidic.,
-low pressure headaches (after LP's) lay down flat , drink flat caffine drinks like coke or red bull, (never offered blood patch so not sure if they work), keep fluid intake high, keep movement to minimum-

- become best buddies (on first name terms!!!!) with the neurosurgeon/neurologist and neuro-opthamologist PA's /secrataries because you never know when you might need to call them I have

if you are ever in doubt call you doctor no matter how silly you feel.

remember pain is a personal thing . we are all different . I like to think that all of us with IIH must have super high pain threshold to put up with all this and still live our lives