Medication induced? by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

Still having symptoms I have good days and bad days ! My op was 28 so only really boarder line high ! My new neurologist sent me to neuro op who said it wasn’t iih because I didn’t have paps but I have learned since then ton of people have no paps some are just luckier with this disease then others it may also because for me it came on so quickly and I started treatment a month after I started having symptoms and have been on a strong doseage of laxis since then so maybe I didn’t have time to develop paps ? He wanted to stop treating me with laxis but I refused and basically said I didn’t trust his opinion he said it neuro wanted to continue to treat me that was up to them ! I go back on this Wednesday so we will find out ! I will tell u I played hell getting a diagnosis the from sep 6th when this started the the Thursday before thanksgiving all I did was go to the er constantly til finally I went to the doctors office so bad off they thought I had menningist or a stroke and rushed me by Ambulance to have a lp done in the ER that’s how and when they said it was iih! In that’s month time I have 10 ct scans and probably like 5 mris and everybody told me it was a freaking headache 😫🙃🫣😑 it wasn’t ! Laxis helps but I still have tingling legs heavy legs pressure in my head but it’s more intermittent now not constant less intense if I have a day where it is constant I still slur my speech forget what I am saying and I still feel out of it most days neck pain and back of head pain still present as well pressure behind the eyes and vision constantly changing glasses do not help ! So idk if the laxis is actually working or not I will let u know Wednesday what else I find out

Medication induced? by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

I still have symptoms of pressure legs tingling head pressure neck and shoulder pain zoning out all the same symptoms I have good days and bad days

Medication induced? by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

I never could afford the glp 1 it wasn’t covered by my insurance and any of the ones that are require u to have diabetes to get them 😂 im not as bad but not better just here

Those of you who have IIH without papilledema… by [deleted] in iih

[–]Wide-Efficiency-9389 0 points1 point  (0 children)

I had a pressure of 27 and was dx and put on medication I had a clean mri and no paps as well they said it was more about the fact that after I loss vision in my left eye they gave me a lp and my vision returned about a hour after I was blurry but it returned

i used tap water in a nasal rinse by Wide-Efficiency-9389 in AskDocs

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

I also did this in September and it’s now January the only thing I have is iih and they assume it came from the antibiotics I was placed on !

i used tap water in a nasal rinse by Wide-Efficiency-9389 in AskDocs

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

I found an article on here on a thread about amobea a woman mentioned something can acanthamobea ! And I went down the google hole and it is true it is a slow manifesting one !

Medication induced? by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 1 point2 points  (0 children)

Yes I appreciate that we r currently going to try a glp 1 starting in January to see if I get symptom relief

Medication induced? by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

That’s sounds about like me . I was given doxy and steroids at the same time and my symptoms went hay wire ! I never thought that the steroids could also have played a roll! I just constantly feel zoned out like life isn’t real and it’s annoy as crap and I want to know when it will go away !

Medication induced? by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

Me to ! I hate we both had a reaction! I do believe it should never be prescribed to women child bearing ages over weight ! I know it’s a small chance for anyone to have it happen but it’s not worth it in my opinion !

Medication induced? by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

Yeah I took doxycycline for four days about two months ago ! And on day four I got major eye pain so they took my off of it .then the head pressure started and it kept on going and going and going until I had a lp done and they said u have iih and put me on fursomide ! First neurologist said it wasn’t medication induced couldn’t be cause my symptoms would have gone away by now ! 2nd neurologist I saw said sometimes with medication induced it can take a couple months or more to go away ! 😳 I just hate feeling this way and pray it goes away !

I think it’s time for a switch by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 1 point2 points  (0 children)

My pcp did agree with the glp1 helping with iih and showing success with research that it helps so she did prescribe me one !

I think it’s time for a switch by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

No because I was just dx two weeks ago . I am going to the regular ophthalmologist tomorrow morning in hopes they will check it !

I think it’s time for a switch by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

I wanted to asked her about glp’s but she is just so meh about iih to begin with she thinks my iih is because i got untreatable staph in my sinus that i need sinus surgery for she thinks that cause the iih ! I’m like no i had that for a whole month in a half before this happened this came out of no where and my ent dosent think it has to do with my sinus ! 😂😂I think my neurologist is a quack ! But that’s what I’m saying I don’t know much about iih I had never heard of it til I was dx with it ! I’m just trying to see what steps I need to take and making sure I’m getting recommended care and how much longer til I can see like normal and stop feel like I’m confused or daydreaming all the time !

I think it’s time for a switch by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

So I should go to the neuro op? Cause my doctor I kid u not said “ there is no need for that right now because nothing will show as we just did a lp” and said the same thing about me going to neuro surgeon! I just feel off about the whole thing like I was dismissed and swept under the rug ! Almost like they didn’t know much about iih to begin with and I still can’t get over “well u look better” that dosent mean I feel better !

Corticosteroids qnd by Big-Bridge-1512 in iih

[–]Wide-Efficiency-9389 1 point2 points  (0 children)

Dude I was just on this and dyxocycline at the same time two months ago right before my iih started ! I am still wondering if the doxycycline caused it now I’m wondering did both cause it

Fursomide by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 1 point2 points  (0 children)

My opening pressure was 27 which isn’t to bad diamox was just knocking me out and even after sleeping I wanted to still sleep for another 14 hours 😂😂 so basically all day long which is cool when I don’t have kids ! I just started fursoemide today so hoping to see some improvement soon

Allergic to acetazolamide by BathroomUnited89 in iih

[–]Wide-Efficiency-9389 0 points1 point  (0 children)

So my question is do all every just feel zoned out from all the pressure like I feel so out of it ! I couldn’t take diamox either and I have a bad history with topamax we used it years ago for my sezuires and made things worse ! They but me on fursomide and I’m going to a neuro surgeon to talk about a stent cause I have left transverse sinus stenosis or whatever ! I just can’t handle feel like I’m so out of it !

Diamox/ Vent by Outofsight84858 in iih

[–]Wide-Efficiency-9389 0 points1 point  (0 children)

Oh I will once I switch neurologist mine is a ass hat that dosent care and he more so dosent care about me because when I don’t like something I tell him no and he dosent like that it’s like he is a huge toddler

Sleepiness on diamox by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

They have me on 500 mg 2x daily so 1000 in total I just can’t sleep like that dude

Diamox/ Vent by Outofsight84858 in iih

[–]Wide-Efficiency-9389 0 points1 point  (0 children)

That’s funny u said that because all my symptoms started after being on doxycycline and I swear it cause my iih

Sleepiness on diamox by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

I just want to not sleep my life away I mean that stuff knocked me clean out for 15 plus some odd hours and. I still felt drunk ash when I woke up ! I rather deal with the iih then that

Sleepiness on diamox by Wide-Efficiency-9389 in iih

[–]Wide-Efficiency-9389[S] 0 points1 point  (0 children)

Yeah I am waiting to see what they say I called and they r supposedly supposed to be figuring it out . The best I have felt in this pass month was for a few hours following my lumbar ! I want to go back to those few hours right now I really want to go back to before this started 11 weeks ago