|Subject: Laura diagnosed 2011. Wed Aug 22, 2012 9:44 am|| |
Hi. My name is Laura and I was diagnosed with IIH in early 2011. I began having headaches and hearing and vision issues in late 2010 while taking doxycycline. I was prescribed it 2 times in close succession and ended up taking two and a half prescriptions worth. I didn't relate my symptoms to that antibiotic and was never told that I should mention headaches if I had them while taking it. I therefore didn't do anything about my condition at first, other than eventually get medication for migraines, which did nothing for me. I eventually began to worry about my vision and assumed my headaches were somehow related. Long story short, I was finally diagnosed and told that doxycycline couldn't possibly be the cause of my condition because if it had been then this illness would have gone away shortly after treatment began - the treatment being diamox (acetazolimid) in large doses. How they can be sure about that is beyond me, especially since so little seems to be known about this disease, but I don't argue with them because it's not as if it will make any difference in the long run.
We all know that everyone is affected by IIH differently. I think I'm more fortunate than many of the people I’ve read about. Sometimes it’s difficult to function – in no way will I ever make light of that – but I manage. I still work. I really have no choice about that. Yet it’s like I have two jobs now. One that pays the bills (and provides the insurance I now desperately need) and one where I work very hard at over compensating for how bad I might be feeling so as not to inadvertently take it out on others. I’ve never been so exhausted in my life, lol!
I have taken diamox all of this time to help control the pressure enough so that my vision loss has been stalled in its tracks. My left eye suffered the most damage but I can still see well enough with both to function. I’ve stayed away from shunts because of all of the horror stories I’ve read about them. I’m not sure how much longer my body can take the diamox though, as the side effects are getting pretty severe. I’m at a crisis regarding that at the moment. My dose is being lowered in hopes that a smaller amount will do the trick without doing all of the other damage. If that doesn’t work I’m not sure I’ll be able to put a shunt off any longer. Still, I take each day as it comes. There are supposedly other medications to try and since my neurologist hasn’t mentioned them I can always try another neurologist too.
Anyway, that’s my story.
|Subject: Re: Laura diagnosed 2011. Wed Aug 22, 2012 4:28 pm|| |
Hi Laura, welcome to the group!! I'm sorry to hear you're struggling w/ Diamox now. I wonder if at least a combination of meds would be effective, since you've been able to manage IIH so far. I know you said they're decreasing Diamox, so just wondered if they're supplementing w/ something else or weaning you off first.
I know there are a lot of horror stories about shunts (and they're not perfect by any means), but I think it's important to remember that people w/ success stories generally aren't looking for information or posting on supportive sites like this. I wasn't able to work in the beginning, but have also been able to maintain employment for the last several years w/ a lumbar shunt..even w/ revisions. It's not always easy, but it is possible for some of us. I really think IIH ebbs and flows for most people but you're right, it's different for everyone.
And just my two cents about the doxycyline..I don't know how they can be sure it didn't cause your IIH unless you had a history of headaches or something prior to treatment. It sounds like people w/ IIH have a genetic predisposition, but doxycycline has been listed as a possible contributing factor for years. They don't really know what causes IIH, so there's no way they can be certain about anything. I think you'll find that most "experts" have their own opinions. I would just encourage you to make a change, if you're not able to make any progress w/ treatment.
I hope you're able to find relief soon!
|Subject: Re: Laura diagnosed 2011. Thu Aug 23, 2012 2:12 am|| |
I posted on your other post regarding menopause before I saw this post (lol) :roll:
I do agree that it affects people differently. I'm glad you are able to work...I wish I could. I know how hard it is for those out there who are working and suffering from this. I basically had to resign from my job because my boss said get fixed or don't come back (in a nutshell...I'm paraphrasing, of course).
I cannot speak to the medication effects, but there are many on this site with useful information.
Anyway, I wanted to say :hello:
|Subject: Re: Laura diagnosed 2011. Thu Aug 23, 2012 10:37 am|| |
Hi Laura! Welcome to the group!
I'm glad that you've found us and I hope that you are able to find lots of support and information here.
I'm in a similar situation to you, actually ... have been maintaining on Diamox since my diagnosis in late 2009. Several months ago, I decreased my dose from 1500mg to 1000mg as the side effects of the meds had become almost more difficult to live with than the symptoms of IIH. I recently began to feel as if my neuro has a very complacent attitude about my treatment, since I was "not getting worse", able to work, etc. But I still hope for a better quality of life or even remission ... so I am starting with a new doctor next week, a neuro-opthamologist who is very knowledgeable about IIH. So we'll see where that goes.
*big hugs* Great to have you with us!
|Subject: Re: Laura diagnosed 2011. Thu Aug 23, 2012 8:16 pm|| |
Hello Laura and a very warm welcome to our group, I am so pleased you found us. You have my full admiration for keeping on working despite the obstacles, and I hope that you inspire other members in the same position. I know what you mean about lasting out as long as you can before shunting becomes a definite need. I did that myself for the first 12 years, just taking my Diamox and having LP's when needed, and I worked the whole time, even after being shunted. The only reason I stopped working was on the advice of my Neurosurgeon, not because I wanted to. That came 19 years after first being diagnosed.
I know the side effects aren't pleasant with the medication, and whatever the surgery for one reason or another, you will always find "those" scary stories to accompany them. Which is why I understand you could feel between a rock and a hard place.
Take time to read all the stories here, and also the information and helpful booklets we have. You can ask as many questions as you want to, and I'm sure in time you will be able to make a more informed decision based on all the experiences you have learned about, and the many other sufferers you've been able to connect with.
As we say we're here when you need us and we will support and help you through all your highs lows and experiences.
|Subject: Re: Laura diagnosed 2011. Fri Aug 24, 2012 4:22 am|| |
Hi Laura, and welcome. I am sorry to hear about the difficulty you are having in getting a sympathetic doctor. That can make such a huge difference. I hope you do keep looking and are able to find a real keeper!!
Be sure to keep getting your optic nerve checked by your ophthalmologist to save your vision. That may be the determining factor as to your future. I too have a lp shunt, installed last November 1st and it has been working without any problems. So not all shunts cause problems. I had tried the different meds and combos of meds, and finally had to give in to the idea of a shunt. I am glad that I did.
Have a good read about the site. There is just so much good info here (
, Heidi) and we are lucky to have such caring members available to help each other.
|Subject: Re: Laura diagnosed 2011. Fri Aug 24, 2012 12:46 pm|| |
ihave a vp shunt and i have loads and loads of video on youtube may name is vdubstdi
i was 30 in the april of this year and i made a video everyday then on the 5th of may i got my shunt and i videoed the lot.
it may help just to see someone take all the steps xx i need to make it like a mini film but just not managed to get it done as the videos are just me talking my crap lol
Dyslexic & Special
|Subject: Re: Laura diagnosed 2011. || |
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