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Normal MRI… what now?

My MRI results came back as normal & ENT have discharged me.

I’m not quite sure what to do. Does this mean I have to deal with migraines for the rest of my life now? My hearing randomly going? The pain and mental attacks from the increases during colds etc?

I know, I should be grateful that it’s normal. But I’m just feeling lost and frustrated. There’s no plan now other than just having to deal with it.

#Sinus #ent #MRI #symptoms #ChronicPain #ChronicMigraines #Hearing #MentalHealth #Feelinglost #normal #WhatNow

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Stapes surgery: your thoughts/experience #Deafness #autoimmune #MyastheniaGravis #Surgery #ChronicIllness #sjogren ’ssyndrome #POTS

I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
#Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss


Gotta catch ‘em all

The last few weeks have been particularly hard on me.

Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

I’m being referred to cardiology for a tilt table test.

In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

#ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia


Weird sound sensitivity #Sound #Hearing #MajorDepressiveDisorder #GeneralizedAnxietyDisorder

So I’m posting because I am hoping that someone on here might be able to relate. In the last 3 to four months I have noticed that I am developing an increased sensitivity to sound. Mainly people speaking, sounds coming from cell phones and the like. I’m having a pretty bad instance of it right now and had to turn off fans, close the doors of the room I am in just to get some relief. Now there are sounds outdoors that are sounding overly loud as well. I seriously feel like I am going to go off on someone in anger. Help please.

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Hi, I am new to the group and so glad that Richard reached out to invite me to join. I am a Ménièrian with hearing loss on both sides. My balance nerve on the left was cut back in the ‘90s. Even though it gave me relief at the time, it has proven to be a mistake as my right nerve did not compensate as it should have. I have terrible balance and use a walker 24/7. So glad to be here! #Meniere ’s #vestibular #Hearing loss


Auditory Processing Disorder

Has anyone had any luck with hearing aids, ALDs, or literally anything else helping them hear and understand people when they're talking?
I just received the Nuheara IQbuds² Max that I ordered. They're supposed to separate speech from background noise but no luck, so far. #AuditoryProcessingDisorder #CentralAuditoryProcessingDisorder #APD #Hearing #HearingImpairment #HearingAids #HardOfHearing

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SCREW the damn it doll. The other (shoe) fell, but it was a boot filled with cement.

Several posts ago aprox. Jan. I posted about my grandson bolting out of a van, going across a major street. He tried to get into someone's home then proceeded to pull down all their Christmas lights. Ran into the back yard hitting the sliding glass door with a large stick. On the other side of that door sat a 98 year old grandmother. The police were called and he was Baker acted obviously and then brought back to the facility where he lives. When things like this occur big or small the facility where he lives always pays for all the damages and then some. The person who lives in the home DID NOT press charges. Today I received a call from the APD woman and my grandson's BA. Apparently (the state) is charging my grandson with trespassing and reckless endangerment. The APD was the one who was served it gives no other info. except that they are to appear in court. That's when we will find out who the state's attorney is and possibly find out who the state is representing.
Obviously somebody called the state and reported it. Possibly a relative or a neighbor she spoke with. Even though she didn't want to press charges someone else did!? WTF
I never knew that could be done. Now they have to hire an attorney for him.
Has anybody ever heard of this before? I'm still in a state of shock that somebody else could do this.

# Autism
#rapid cycling bipolar
#Hearing impaired
#mentally challenged
#psychotic behaviors
#self -mutilating

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When the Other Shoe Drops Use the Damn It Doll.

So today I get another phone call from my grandson's Aide. When that call comes in, and I miss it, and the voice mail is only 6 seconds long my heart drops. I'm his Guardian so something has happened. The last time it was horrific, that was in December. He just celebrated his
24 th Birthday last month, his mother and I got him a upscale new TV. So today he is with other clients and staff in a van. One of the staff needed to use the facilities. As she's getting out of the van he bolts past her and into a small supermarket. He then proceeds to destroy about 1/3 of the store, and slaps a customer across the face. By this time the owner has ushered all customers out of the store closing the store. The extra staff from where he lives and the police arrive. (Now we have ppl outside trying to take pics of him) Police intervene thank God. They were in a different part of town it was not the same police that usually go to the house when he takes off or causes issues. And kudos to these three police officers who were more than kind and extended verbal and physical help in getting my grandson back into the van. My grandson was not ready to go and he was still in the state of raging psychosis. In the midst of getting him to settled down his aide she got kicked in the head so I'm praying she's all right. I am sick about this this is starting to ramp up he is on several medications including haldol. And then I have to call his mother who is in a nursing home and tell her what happened. I just feel like every ounce of energy has been sucked out of me. I'm so damn sick, myself I can barely move due to back probs. I'm so angry because there is no way to have proper consequences for this behavior because he's #mentally Challenged #Bipolar ,# Autism spectrum, #ADHD , #Hearing impaired, and also #Seizures . I think I'm going to beat the hell out of my daughters damn it doll, then take a nap.
#Baastrupt syndrome
# Bone spurs
#Cauda Equine Syndrome #Costochondritis
#hiatal Hernia
# Peripheral Neuropathy
# Pleurisy W/D
#Raynard syndrome
#spinal stenosis


Not-so-little update

Man I love when you type something and then the app crashes so you have to type it all again.

Ear infection is getting better :D no more discharge, just hearings gone but I’ve got 2 days on the antibiotics and I’ve looked up how long it can take for it to come back and it’s up to 4 weeks apparently. A helpful warning so that I don’t get frustrated after only one week. Oh for a few days I did have extreme lightheadedness but this was at the start of the ear infection snd it’s worn off now so I believe that was another part of it.

Back has been in pain. Leg wanted to start up too but thankfully the sensation that I get when the pain is starting up didn’t stick around.

Chest pain but not sure if it’s actual chest pain or skin irritation pain as I was wearing a new T-shirt for a few days which has been a bit of a sensory attack at points (it’s got glittery thread in some of the logo, which is a no-no for me in socks but never had with a T-shirt before so gave it a try). Rubbed sudocrem in it and the T-shirt is in the wash now so hopefully will find out if it was irritation or not.

The narc came back into my life. I wasn’t perfect with them and I apologised to them after my past few Bible plan readings making me feel the need to apologise, and long story short they apologised and still wanted to be friends and I agreed because they phrased it as so I didn’t have to avoid our friends if they were with him.

I can’t tell if they’re actually a narc or not. They have all the signs but they apologised about their behaviour and like to own being narcissistic, both of these things narcs don’t tend to do. However our friend said that they were a narc and they deal with one every day and have done for their whole life, whereas I only whenever I hung out with the previous narc and only for two years.

Anyways, they’ve been kept at arms length until today. They initiated a conversation and it ended up like being the old times. It was nice, but afterwards I looked back after absentmindedly noting some red signs in my head of his previous behaviour (when they came up in conversation, I tried to get them to pass as quickly as possible by not engaging in talking about it, and I also tried to remind him what we had agreed on when we first started talking again, but he didn’t seem to care which I guess makes sense when he’s not the one that would hurt).

As a result, I’m not sure if it was him genuinely wanting a conversation or if he had other intentions. I’m leaning towards the latter though, and it sucks. I’ve been told I’m too nice before so it just opens myself to hurt. How he acts the next time I talk to him will tell me whether he had good intentions or not I guess and I can go from there.

#NarcissisticPersonalityDisorder #narcissism #Friendship #ChestPain #Infection #EarInfection #Hearing #BackPain #ChronicPain