u/Remarkable-Grape-796

anyone with ear fullness/pulsate tinnitus on top of the usual symptoms? how’s your journey going?

im new to this. working with a dr now to test and treat possible MARCONS- I also have an impacted wisdom tooth in my sinus cavity that I believe is causing some issues. curious what others think.

so I was diagnosed mild GERD about three weeks ago. I had excessive burping, upper back pain, some blood pressure fluctuations and tight chest. I started taking famotidine and azelestine (for eustacian tube dysfunction) and the past three days my upper back pain has increased (was going away) and I’ve had a headache.
is this possibly from the GERD? Is this what people would say a “flare up” is? Or maybe a side effect of medication? I’ve never had headaches like this prior.

my body is falling apart :(

so I was diagnosed mild GERD about three weeks ago. I had excessive burping, upper back pain, some blood pressure fluctuations and tight chest. I started taking famotidine and azelestine (for eustacian tube dysfunction) and the past three days my upper back pain has increased (was going away) and I’ve had a headache.
is this possibly from the GERD? Is this what people would say a “flare up” is? Or maybe a side effect of medication? I’ve never had headaches like this prior.

my body is falling apart :(

hi all! I’ve been reading these posts for a few weeks now and trying to take it all in. I initially was misdiagnosed with IIH — and then later found out all of my symptoms were from GERD and an impacted wisdom tooth. the ENT I saw says my GERD is very mild but because I ignored it for almost two years it has caused some issues with my ears.

my symptoms are;

pulsate tinnitus

upper back pain

burping

difficulty swallowing

heart palpitations

blood pressure rises @ night

(side note: all of this is amplified around the time of my menstrual cycle; weird?)

I was prescribed a prescription strength Pepcid(1xday )as well as a nasal spray(2xday) (GERD caused eustacian tube dysfunction) and recommended I take both for six weeks. I already do not eat past 4pm, I sleep elevated, and I have lost 20lbs since May. Trying to do everything I can to make myself feel better.

does anyone have experience with these medications and time frame? Will I have relief soon? Also, I’m getting mouth sores and weird dry mouth around the edges- is this a side effect of the meds?

EDIT TO ADD, Wednesday will be week two of these meds.

so I stopped taking Diamox 250 twice a day last Wednesday morning while in the hospital. never started back up per the dr recommendation— also had lumbar puncture last Friday afternoon. my body is adjusting to BOTH and I’m trying to be gentle with it. my question is for those that have gone through Both of these. Should I be concerned? my limbs are tingly and numb, my neck is kinda sore and i get a headache at the back of my head periodically. would this be from the LP or stopping the Diamox? this was my first Lp so I’m not sure what to expect as far as healing and stopping the diamox may be causing some of these side effects to? Any experience would be helpful. TIA

not saying this will fit everybody because we are all here for different reasons, but I would ask you guys to look into an upper cervical chiropractor in your area. specializing in the cervical area!!! I am lucky to have found one near me and treats most of my symptoms. He tis there when neurologis, ENT and MRIs just aren’t showing “anything” or told to live with it. I have researched a ton about the nerve and just a simple at the base of our skull can cause so much pressure fluid buildup, etc. Just thought I would share this information with you guys. 💕

So here I am almost 3 months after my initial diagnosis of IIH. I’m at the hospital, with dizziness, blurred vision, sensitivity and head pressure. The same hospital that told me in an ER visit that I had IIH is now (after three days of being in the hospital) telling me I in fact do not have IIH. Had an LP done for the first time yesterday & the opening pressure was 20 and closing was 12. Everything in my scans MRI/MRV/ANGIO/CT all came back “clear”. I am so frustrated. I have been taking Diamox this whole time with awful side effects. I have restricted my sodium intake per the dr this whole time also causing it’s own issues. And now I’m back at square one. Been off the Diamox for three days so withdrawing slightly. And nobody knows why I feel the way I do. This all started with hearing loss/pulsate tinnitus/ pressure in my frontal lobe and eyes/ neck and shoulder tightness. I have no papilladema.

Mixed emotions as I am grateful I don’t have IIH nor have to take that poison medicine anymore but I am so upset I’m starting all over and don’t know what it “wrong” with me. For reference my scans three months ago said partially empty sella, prominent meckels cave,flattened pituitary gland w/ a smalll cyst. Now they’re saying it’s ALL CLEAR? like what?? Why do I still feel this way? Anyone ever experience this?

I’ll be leaving here with a referral to ENT. Because Neuro has signed me off and said nothing neurological is wrong and someone slapped IIH on me because I’m an overweight woman who happened to have a headache (because my dr told me to INCREASE sodium thinking I had POTS @ the time) and in my mid 30s. 😡

Edit to add: I have only actively been taking Diamox for about two months. Low dose 250mg x 2 a day. Hadn’t had it since Wednesday morning LP was done Friday afternoon.

Does anyone here feel better when they’re standing/moving? I feel like my pressure is worse when I’m sitting and driving but if I’m up walking it’s less? Is this normal? Also, not sure about the laying flat part as my bed is always on incline even before I was diagnosed. But I can say laying on my left side is the only way I don’t feel pulsating and throbbing in my head.
Just wondering what others experience. 😀

I’m not sure if this is a symptom of the IIH or the Diamox— but does anyone have pain across their upper back? like I feel like I have the constant need to stretch my trap muscle area. it’s a horrible feeling. anyone have tips or recommendations for some relief?

that and my hearing loss are really my only complaints with this whole new diagnosis and it’s so uncomfortable 😅

So I was diagnosed a month ago through a CT scan (ER visit) and then an MRI - both confirmed the IIH. I’ve been on Diamox sincs the CT scan per my PCP recommendation. I’ve also lost a bout 20lbs. Diamox is no joke 😅.

My question is, does every get a LP- like is it used for diagnosing or something else? I’m just curious after reading other posts. also, what is a bloodpatch??

Im managing well with my IIH with 250x2 Diamox- except during my menstrual cycle where it feels a little heavier or during a storm….BUT I do not have papilladema or anything wrong with my eyes according to the ophthalmologist. I’m just not sure what the treatments look like?

any insight or experience would be helpful, to ease my anxiety.

edit to add: I show empty cella (?) and flattened pituitary gland In my scans which is why they stuck IIH on the diagnosis.

newly diagnosed with IIH after getting a CT scan during ER visit. I’ve had horrible pulsate tinnitus, and a pressure behind my eyes for months. They ophthalmologist did an exam in January and said everything looked fine yet here we are.

Question anyone else in perimenopause during this time?? I know it’s so controversial on why this happens. I just feel like hormones definitely play a role. I hate taking medication’s.- and trying to figure out which way to go to “cure” this- wondering if I started HRT to balance my hormones if that would help. Anyone have luck with this? is it only the Diamox medication that helps people? obviously yes I know weightloss helps too. just trying to see all the angles and understand it more.TIA