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 UPDATE 2 weeks in

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Jewls27
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PostSubject: UPDATE 2 weeks in   Wed May 09, 2012 6:10 pm

Well its been 2 weeks since i have been diagnosed and on 1000 mgs of Diamox, it was a little tough first few days of meds but i thought symptoms were getting better. Besides the constant pins and needles feeling everywhere and heartburn and fatigue. i was feeling better. Then it started raining and it all went to hell! last week the 2 days it rained i had bad vision problems but i shrugged it off. this week it has rained 2 days so far and i have had HORRIBLE days between vision and headaches and pressure its awful :( i cried myself to sleep knowing the med wasn't working . Called my Neuro this morning and she increased my diamox to 1500mg a day, told me to take pepcid for my heartburn and to call her if im not better in a few weeks. i have to have blood work done in 1 week, which im not all that sure what for. Do any of you? and she referred me to an Ophthalmologist. Which that also i don't know why. Do you guys know? She didn't want to do and LP on me? I would have thought she wld want to, but hey im not complaining she didn't lol. My friend whoes in the medical feild said i should just ask for a shunt!? I told her i need to give the meds a chance even if that means raising the dose. Another question i have is on a 1000mg i have the 3 side effects does that mean there just going to get worse with the dose being 1500mg? Thanks for listening.....Just wish i would feel better already :(
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Heidi
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PostSubject: Re: UPDATE 2 weeks in   Wed May 09, 2012 7:19 pm

Jewls she may want to be doing the bloodwork to check your Liver and Kidney function since you've been on the Diamox, which is standard procedure as this medication makes them work harder.

As for the side effects, it can take a while for these to settle down as your body needs to adjust to the medication. It's different for everyone, some experience a couple of the side effects, some all of them, again some may tolerate them better than others whatever the dose. It's a wait and see thing I'm afraid. Hopefully you will start to notice a difference soon.

She wil have referred you to an Ophthalmologist so that they can monitor your vision, especially your visual fields to see if the medication is doing what it is supposed to be doing and keeping the papilledema at bay. It's an accurate way of them judging the medications working like it should.

Barometric pressure also has an effect when you have IIH, lots of people who don't even have IIH suffer with Barometric Migraines, but we seem to be very sensitive to them, maybe because of the raised intracranial pressure. Keep a symptom log and see if you notice a difference during the times when the weather is bad, such as raining, overcast and stormy, even during hailstones and snow.

Heidi hug
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Jewls27
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PostSubject: Re: UPDATE 2 weeks in   Wed May 09, 2012 9:23 pm

Thank you so much for the information Heidi. I just had to call the neuro this afternoon again cause i walked outside and my eyes slowly closed and my head was under soooo much pressure it was horrible i had to hold on to something. its happen twice today. and along with that i wear glasses and i feel like my head is swollen cause i have marks from my glasses which i have never had before. so now im just waiting for my Neuro to call me back. i dnt know what to do but i know it was scary knowing i couldnt left my eyes at all. And this is the first time that has ever happened
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BananasMom
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PostSubject: Re: UPDATE 2 weeks in   Wed May 09, 2012 11:41 pm

Hi Julie ... Thanks for the update, and I'm sorry you're not feeling much better. *big hugs*

Ya know, as I was reading your post, I was remembering how I went through almost exactly the same experience after my own diagnosis two and a half years ago. After my lumbar puncture and starting Diamox, I felt so much better at first that I honestly thought I might be one of those whose symptoms just "went away" after one LP. For me it was catching a cold, rather than a change in the weather, that brought all the IIH symptoms flooding back in full force ... but I remember the extreme discouragement I felt about it, just like you are describing now.

I don't think it necessarily means that the side effects will be worse just because you are taking a higher dose of Diamox. It all depends on the person. 1500 mg was my maintenance dose for almost the entire time I've had IIH, up until just recently. And some people take even higher doses than that. So try not to worry ... you may not notice a big difference.

Heidi hit the nail on the head on all points above ... the bloodwork is to make sure all your organs are dealing with the Diamox okay, and the opthamologist will be monitoring your visual field and papilledema. And yes, most of us (including me) are VERY sensitive to barometric pressure changes. Just seems to go with the territory with IIH, unfortunately! :(

For me, it really helps to remind myself when I'm going through a bad, high pressure time with my symptoms, that it WILL eventually cycle back down and I will feel better again. It seems like a simplistic thing, I know ... but it really helps me to stay calm and encouraged when I'm hurting. And it's really true. Sometimes even within the same day, my pressure will drop back down. And being panicy, scared and upset only seems to make my head worse. Try keeping the symptom log as Heidi suggested, as it will help you to start identifying what seems to trigger your symptoms and what helps to relieve them.

Stay strong, sweetie! You're not alone, and it does get better. *HUGS*

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Jewls27
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PostSubject: Re: UPDATE 2 weeks in   Fri May 11, 2012 3:46 pm

Bananas mom thanks for the support and info. its very helpful Smile i just talked to my neuro and she said that the way im feelin can be from the diamox its self? but i dont know if that seems right to me or not. She wants to see how the blood work comes back. and i go in monday for that. im still feeling a bunch of pressure tho. and kinda like my heads in a cloud. why wld diamox make me feel worse than i did off the meds:(
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medmisfit
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PostSubject: Re: UPDATE 2 weeks in   Fri May 11, 2012 6:44 pm

Jewls, I'm sorry to say that some of these meds have side effects that are basically like reading from IIH symptom list or a guide on 101 ways to kill you..lol. It's possible that Diamox isn't at a therapuetic level yet or simply doesn't work for you. It's good that your physician is doing the tests..it seems like you're being heard at least. Everyone seems to respond to meds & shunts differently, so finding the right treatment can be a little trial & error. That's one of the reasons the site has provided a symptom log..it's a great way to track how meds have effected you. Just make sure you keep your physician informed & give meds enough time to work..your pharmacist should be a great resouce for any questions about how long side effects will last, how long it takes to adjust to meds, etc.

It sounds like you're on the right path, so just hang in there!
Take care,
Julie
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Sophiasmom
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PostSubject: Re: UPDATE 2 weeks in   Sat May 12, 2012 7:29 am

hi Jewls;
your eyelids closing made me wonder about this:
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myasthenia gravis. although if you did not have that symptom before the Diamox, it's probably the sedation which can be pretty intense. I don't think I'd be conscious at that dose of Diamox. But I just wanted to give you this info to ask your neuro and make sure they don't think it's something they should investigate.

Please try not to cry sweetie; it creates a Valsalva effect (like coughing or bearing down) and this increases your intracranial pressure (ICP). I have found that if I have a crying jag I will then be sick for 24 hrs. just crying a little can trigger a severe migraine. If you are really sad try to cry without stopping breathing; in fact if you hyperventilate this should lower your ICP. I am realizing I can no longer cry, sing, shout, or project my voice in anyway; this makes me lightheaded. I have always been very soft spoken and now I know why.
hang in there,
Deb
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Jewls27
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PostSubject: Re: UPDATE 2 weeks in   Sat May 12, 2012 2:03 pm

Thanks Sophiasmom....i looked myasthenia gravis up and i dont think its that, but hey you never know. So i will inform my Neuro. My MIL's dog believe it or not had myasthenia gravis. He is now passed away but it was a loooong hall with him. What dose of diamox are you on? I dont get it, really why would they put people on a drug that has side effects that give us what were trying to get rid of?! it makes no sense! and the topamate has the same side effects.....I really thought it was the weather that was causing my eyes to close when i went outside because along with that the pressure in my head was soooo over whelming. I have noticed that i have randomly been crying also and yes it either makes my headache worse or creates one. I cried yesterday cause a lady wldnt let me pay a bill that was in my husbands name....Stupid I kno lol cause i dont cry over stupid stuff like that. So i dnt know if thats from the Diamox or just from all the stress of everything.
Thank you everyone for replying to me you guys make me feel at ease. It would be nice to see if you guys are on facebook so we can become friends on there as well Smile
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Sophiasmom
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PostSubject: Re: UPDATE 2 weeks in   Sun May 13, 2012 3:12 am

hi Jewls;
I am recently diagnosed also and still playing with the Diamox. Because I am treating my sleep apnea this seems to take a big edge off my pressure and so I actually seem to have done well with a Diamox dose of 62.5mg twice a day! You might want to ask for a sleep study to find out if this is a factor for you; sleep apnea is known to increase intracranial pressure and it's a lot more common than even the docs realize. I think the reason these sedating meds are used is because of the vision complications that can occur with IIH. and I don't think there's much else that decreases the ICP. but if you are about to go blind I guess you would choose the medication with its side effects before you go to a shunt which seems to be fraught with issues. I personally think treating the sleep apnea is easier, and sleep apnea is a BEAR to treat. some people do great with CPAP but it took me a year and a half almost to figure out how to tolerate it.
having a condition like this that no one can see, an "invisible illness" is enough to make anyone about to lose their mind. so be gentle with yourself. I know that most people around me think I'm nuts and have little patience with my disability. If I was in a wheelchair they wouldn't DARE. having trained myself to not cry (used to be a cry baby), I now feel like Spock and it suits me just fine. it's much easier than reacting emotionally to all the insanity in my life. just focus on the next step to clear your head and keep going. learn as much as you can about your illness and be your own advocate. don't assume your doctors know everything, keep searching for answers. There is so much we don't know about many things and IIH is one of them.
Deb
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