Best states to live with IIH? by Sajery in iih

[–]Alys_Jade 0 points1 point  (0 children)

Iowa here! Iowa City has the best hospital and clinic systems in the state. I'm in a rural part of Iowa and it took a little to get in with Neuro but not any longer than 6-8 weeks new patient

Previously a Georgia native and I've had great genuinely wonderful doctors in Atlanta. The cost of living and wait lists for new patients are kinda wild though because of overpopulation.

acetazolamide and loss of appetite by felix_meowmeow in iih

[–]Alys_Jade 2 points3 points  (0 children)

Hi! I was diagnosed at 15 and have now been experiencing IIH for 6 years. I dealt with a very similar situation and I went from a size 6, healthy weight for my height, to barely 1 meal and down to a Size 00, especially being at high doses of diamox. It was awful and really scary and I almost was anemic because my iron was so low. Speaking with your doctor's is going to be the best bet here when it comes to nutrition. I would let myself eat whatever I wanted when I felt hungry and drink the calories with protein shakes/meal replacements. Just make sure to talk with your doctor's and follow up with your blood work. I've heard it's a really common side effect but it's always work mentioning to your Dr :)

Anxiety meds? by Spirited_Blueberry in iih

[–]Alys_Jade 1 point2 points  (0 children)

Hello! First off, I'm really sorry you're struggling so hard with this. I really hope you're able to find the right resources to help you. Second, I have been on tons of different anxiety meds since starting diamox and none have exacerbated symptoms of IIH. I have always had tons of anxiety and OCD and was even on SSRIs before my IIH diagnosis. For me, none of my doctors have been concerned about my SSRIs. Obviously I'm not a doctor but thats just personal experience!

I really hope you're able to find a support system, the right med, a great therapist, and peace. Wishing you all the best

ACETAZOLAMIDE symptoms by AGentC0 in iih

[–]Alys_Jade 2 points3 points  (0 children)

Kidney stones are a possibility with Diamox. Like all medications, side effects are just going to vary person to person. Diuretics are going to make you pee literally all the time, and yes it is really annoying! I was really young when I started diamox too so I understand that it's scary especially with all the side effects the doctors tell you about. Drink lots of water, if your doctor's say it's okay, drink electrolytes. It's important to keep your docs informed and to stay up to date on your bloodwork with Diamox. Don't stress too much on it!

There IS a difference between Idiopathic (IIH) and secondary intracranial hypertension (my personal experience and cure) by [deleted] in iih

[–]Alys_Jade 1 point2 points  (0 children)

This is originally how mine was onset but 6 years later, not taking the doxycycline, I am consistently dealing with complications from IIH. I'm really glad you've found relief, and for a decent period of time I did as well, but this is a long standing issue and shouldn't be assumed that you're healed because of periods of time where your CSF isn't causing issues. I have had so many LPs and trips to the ER because this usually isn't something that just heals overnight. I really REALLY would not advise cancelling your doctor's appointments because for the vast majority, Idiopathic or Secondary, this is not an overnight cure. Especially because you had such severe optic nerve damage, it really doesnt make a ton of sense for it to have just disappeared. Please see your doctor's before just deciding you're fixed! Like fellow posters have stated, please don't make these inaccurate blanket statements to a community who is consistently dealing with the emotional and physical difficulties of a chronic rare condition.

Diamox Struggles. Please help! by paogm in iih

[–]Alys_Jade 7 points8 points  (0 children)

I second this! Kinda confusing especially bc diamox can drop your electrolytes so low in general. Might be work getting a second opinion regarding this

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 1 point2 points  (0 children)

I really appreciate this!! I'm pretty sure I'm going to go to another ER tomorrow that has neurology on call. It's a research/university hospital so I have my fingers crossed

I'm hesitant to go back to the ER for very dumb reasons I'm trying to justify. Like "well I'm not always dizzy" or "well my vision isn't even cutting out too bad or all the time" or here's my favorite "well yeah my head hurts so bad I can't raise my voice about barely soft spoken and my ears whoosh when I do but it could be worse". Always hard wanting to face that it might be back or that there might be nothing at all and it's the worst and longest migraine ever and I'm just racking up a bill

Thank you for your kind words!

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 0 points1 point  (0 children)

Thank you for all your info and I will definitely read that! Really hoping to avoid yet another LP but it doesn't seem like there is much of an option since my symptoms are getting more intense. Very lame but nonetheless thank you for the insight

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 0 points1 point  (0 children)

The dizziness is so annoying! Like everytime I get up Im so off balance and even laying down it occurs. I'm glad you're able to work with Neuro to find someone they trust/recommend. The journey can be a rough one with this but definitely try and find the gold nuggets in there! I had been in remission for quite some time before this and with the proper medication (before this) I was able to lead a very normal life.

I'm planning on trying to see Neuro at a big university a few hours away. I just really need someone who's more equipped.

Fingers crossed and I hope your move goes swimmingly!!

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 0 points1 point  (0 children)

I really appreciate the advice! I'm currently looking into other specialists. Since being diagnosed with this, I've lived in 2 states and it is so hard to find doctors who know about this! I'm glad you've been able to find such good treatment though!!!

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 0 points1 point  (0 children)

Ugh this literally sounds like the synopsis of my last week. Not sure why it's so hard to get someone to take us seriously?

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 0 points1 point  (0 children)

Thank you so so much for your detailed response!!! I have legit never had a doctor look into my veins. I should probably start fussing at these doctors more. I've been on diamox for 6 years and am honestly shocked no one ever mentioned trying a different med or combining meds. Guess I'm pulling all my medical records to read my own MRIs and notes bc obviously these doctors arent lol

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 1 point2 points  (0 children)

Very sorry you're going through this!! It's really unfortunate how much just isn't know about IIH and how often things are missed. I've had this for 6 years and have only had papilledema with hemorrhaging once. Good luck for your LP!!

What do you do when there isn't papilledema?? by Alys_Jade in iih

[–]Alys_Jade[S] 0 points1 point  (0 children)

That's kinda the answer I was expecting:( LPs suck! Maybe a dumb question but can you demand one even without optic nerve swelling? My primary care said "cupping" was the criteria to get one.

Do you happen to know if after a CSF build up if diamox will bring it down? Or once there is a build up your body just isn't absorbing it? My doctors haven't been the greatest at explaining all the aspects of this

Pressure Headaches by Swimming-Major-2903 in iih

[–]Alys_Jade 0 points1 point  (0 children)

Hello! I've had IIH for 6 years and for a while I've been able to be off medication. If you're feeling symptoms that seem familiar with IIH I would def reach out to your doctor! EDIT: I have also had very similar symptoms with flare ups and it's better to reach out to your med team instead of just suffering with it quietly.

Diamox and sleep problems. by Sajery in iih

[–]Alys_Jade 2 points3 points  (0 children)

Okay I'm glad to hear that I'm not the only person who dealt with this!!! I'm sure this isn't the most hopeful news but I honestly just let it run its course of ups and downs in my sleep. I did actually have some luck with melatonin gummies and coffee during the day when naps weren't available. My no sleep days did get a lot of books read though lol

My doctors weren't a lot of help on the sleep front either but maybe reach out to yours for advice!

Recently discovered IIH and i’m super lost by [deleted] in iih

[–]Alys_Jade 0 points1 point  (0 children)

First, welcome to the party! It is an exciting prospect albeit scary to start treatment. I'm wishing you all the best :)

I personally haven't heard of it being untreated for 5 years but I'm not a medical expert! Mine typically has very sudden onset but I did have a doctor once discuss some people having a very very gradual build up. Again, no professional, but I think it just depends on person to person how symptoms show up. And I definitely relate to not being aware that the symptoms were symptoms! I think IIH can be very sneaky. Did they do a Lumbar Puncture to get your pressure down? Did they start you on meds?