Post-Traumatic Stress Disorder (PTSD) Support Group

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soulsearcher83 08/30/2019

i had been feeling good lately. My mood was up. I started working again. I was feeling good enough to put off ECT.

Then yesterday happened.

I have has ringing in my ears for 2 weeks. Annoying but not horrible. My gp put me on Sudafed and then prednisone. Neither worked. 3 days ago I started to have vertigo. Yesterday it got bad. I almost fell a few times.

Since the meds the gp gave didn’t work, he sent me to an ear, nose and throat doctor. Yesterday they tested my hearing. It’s normal. My ears looked normal upon examination. My symptoms don’t line up with a virus or inner ear problem.

The doc said my problem is not my ears. He asked if I have a history of migraines. I do. He said it’s most likely a neurological problem. Since I have had migraines he said I might be having a vestibular migraine, where there’s no headache but can be vertigo and ear ringing. But he said that that doesn’t even quite add up to my symptoms because it should have gone away by now, not gotten worse. It’s usually more intermittent too, not constant and worsening like this.

This is the 3rd time this year that a doctor has referred me to a neurologist for a 3rd condition. I was referred to one for peripheral neuropathy, hand tremor and now this. I haven’t gone bc I’m full up on doctors and can’t handle one more god damned specialist.

I saw a neurologist in PA before I moved here. They could not find a cause for the peripheral neuropathy. The tremor is usually of an unknown cause and can be managed with medication. But it wasn’t bad enough to endure more doctors and more testing, only to be told we can’t find a cause. Now this.

Three days of progressively worsening vertigo. 2 weeks of ear ringing. Now I can’t drive because if I can’t walk straight, I can cause an accident. I had to take the bus to see the ENT even though it would have been a 5 minute ride. But didn’t want to risk it.

Im ready to throw in the towel. Not SI but giving up on any chance of a normal life where I can enjoy photography, hiking, travel, develop new friendships, relationships.

I’m calling today to schedule with a neurologist. But I am not sure if they can help me. The medication that the ENT doctor gave me for dizziness also didn’t work. Which isn’t a surprise because it’s usially prescribed for vertigo from inner ear problems. But he’s an ent so anything I need for this would come from a neurologist.

Medication and vestibular PT are the treatments for chronic vertigo. If it doesn’t go away by Monday, I’m terrified that is what I have. Most vertigo lasts minutes or up to a few hours. Some episodes can last for up to 72 hours. Mine is showing no sign of relief, only getting worse. I’m even dizzy when I’m laying down and not moving at all. And I’m either over or close to the 72 hour mark.

That being said, ECT is put on hold indefinitely.

It seems a normal life was never in the cards for me. Why keep trying to have one?

EDIT: When I say normal, I don’t mean a house with a picket fence, husband, 2.3 kids and a dog. I mean normal as in I’m able to work, enjoy socializing, a leveling off of symptoms, stabilizing and not having some other part of my body fall into dysfunction. Normal is relative. What I’m saying is I can’t even reach a new state of a stable normal without another health problem screwing it all up.

mujicaptsd 08/30/2019

I don't. I can't. It's not a realistic goal for me according to my doctors. I've had to come to consider a "norm" to be like a mathematical mean or a average in arithmetic, an idea on paper but nothing that exists in human reality walking around as a person to whom I could actually compare myself. There's a book I read last year called "Everybody's Normal Until You Get To Know Them." It confirms what I thought to be true from my own work as a hospital for 10 years going room to room on the job meeting patients in private, revealing conversations behind closed doors.

I came to realize that my only realistic goal was to become as high functioning as my PTSD and Chronic Kidney Disease and Diabetes would allow, and not to compare my life to what is normal. For example, I have persistent high-pitched ringing in my ears from a car bombing I survived as a missionary kid overseas when I was 9 years old. If you've heard cicadas singing down south in the USA, that's what it sounds like. I'm hearing it loudly right now as I write this. I have to work at not allowing it to drown out my thoughts.

I can't medicate it because my kidneys can't take most medication, not even aspirin. My kidney disease has had me constantly on the edge of dialysis for 8 years now. I have signed legal documents to refuse dialysis even if refusing it is fatal.. Dialysis is ok to do indefinitely in theory, but having worked in hospitals I know it's not so in fact, no patient I ever was called to see could take it indefinitely. In fact, they called me to witness signing waiver documents to stop it and die.

Fighting Chronic Kidney Disease to fend off dialysis, then, has ruled out a lot of psychiatrist medications for my PTSD. Almost all tranquilizers and antidepressants are processed by the kidneys and mine are too fragile to take on extra processing. I especially had to stop taking Seroquel for my PTSD nightmares, so I'm so glad Prazosin is processed by the liver. That's why other treatments folks discuss here like ECT and EMDR are alternatives I hope to hold in reserve for me to have a future with PTSD.

I can imagine, then, how disappointing it has to be for you to have ECT put on hold indefinitely. All I can say is that, after 7 years of bad news about more nerve damage every time I went to my neurologist, my visit with my neurologist two weeks ago finally was a good one. They found no healing, but a halt did happen in my progressing nerve damage from kidney disease that has forced me to use a cane for 8 years.

I'm hoping you get a good word from your neurologist, too. Really sending you my fervent support, soulsearcher.

soulsearcher83 08/30/2019

Thanks muji. I don’t expect to have a normal life like everyone else anymore. I expected to find s normal way of functioning without something else in my body falling apart. That’s the only normal I could expect after all of this. But it keeps getting taken away from me.

SimpsonsOK 08/30/2019

Soul, right there with you and Muji. We do what we can, when we can. Doctors do have their struggles with us due to the complex of physical issues. When I had a severe vertigo attack, which lasted for a stretch, the ENT sent me to PT as crystals had been dislodged from the inner ear, where they should stay put, and were moving around in the next area. Understand how this is affecting you. Yep, I keep trying to believe that now it's done, then the next thing comes up. We'll make it through. Healing and comforting hugs.

soulsearcher83 08/30/2019

Thanks SimpsonOK. The doc ruled that out too as my problem. The only fit that comes close is vestibular migraine.

After I got up today, I decided to take my dog for a walk. It was there but I managed. But I'm in Texas so before I went out I drank a lot of water. Drank more after I came back in.

The vertigo and ringing are still there but the vertigo is a bit less now. No change in the ringing. Dehydration may have been making it worse. Which makes sense bc when I get dehydrated, it can trigger a migraine.

It's still there like I said but I'm drinking a lot of water and gonna see how the next few hours go. Waiting on the neuro to call back and schedule an appointment.

4Healing 09/04/2019

I don't know how much help this is... but just so you know I also suffer from ringing in the ears and I have for the past 10 plus years at first I was going crazy didn't know how I would continue on but eventually I became used to it and have adjusted as hard as it is... there is hope. The vertigo on the other hand I have not experienced so I apologize I can't' relate there I am sure that makes it extremely difficult. Please don't give up hope!

mujicaptsd 09/04/2019

Your talking here about ears ringing and my acknowledging mine back here led me to open up to a psychology prof friend about it at work at my community college, soulsearcher83. It was good just to get if off my chest that to listen to the world outside my head involves my trying to focus on sounds out there over a constant ringing sound inside my head.

As I described, it's been there ever since I was 9 and I was in that car bombing overseas I've described here many times. I still struggle with its physical and PTSD after shocks now, decades later. It burst my little sister's eardrums. Me, I have the ringing in my ears with me from that bomb just like I have a literal dent in the back of my skull from when the explosion snapped my head back against the rear window frame of the car as it exploded. As I said here, the ringing sounds like that high pitched singing sound of cicadas down south in the USA.

For those who may never have heard cicadas down south in the USA, here's a Youtube recording of what it sounds like.
https://www.youtube.com/watch?v=oqys8lKsu4s

Speaking of never being normal, just one symptom alone from how that bomb damaged my 9 year old brains is that I hear that all the time. I'm hearing it now as I write this. Talking about it doesn't make it stop, but it does make it a less isolating post-bombing symptom for me. Connecting through group support instead of isolating is, for some reason, half the battle of living with it. Hope connecting to support works for you, too.

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