MRI/MRA for car accident ( pulsatile tinitus) 5 months before PMR. And a question about the contrast.

[3daysinjuly]

Yesterday my ENT gave me a script for MRI/MRA of the head and neck for pulsatile tinitus which came on a few days after being rear-ended 7 months ago. 5 months before I ever heard of PMR. Assuming my kidneys are good they will and need to use contrast to see what is going on. I will get this done. If you have ever had this kind of tinitus you know how bad it can be, especially in the quiet night.

[Grants148]

I have this tinnitus all the time and it does affect my sleep as it is more noticeable at night.

[3daysinjuly in reply to Grants148]

Yes, pulsatile is rough. I know the stress of having PMR makes the sounds louder. Have you had it long?

[Maisie1958]

Hello, I can sympathise with you and hope both PMR and the Pulsatile Tinnitus improve rapidly-the two together are definitely miserable.

No advice but my unilateral PT started in July-couldn’t believe how loud it was. No idea why it started but did have a very sore painful neck on that side a month before-I had quite a lot of screening including MRI etc of head (no contrast) and CTA of neck with contrast-all normal. Have they checked bloods for anaemia or thyroid problems etc?

I was resigned to “living with it” -when to my utter delight two days into my recent holiday I realised I couldn’t hear the “whooshing” anymore. I have no idea what caused it, why it went but just hope it stays away-husband is sure it was connected to my neck pain. Doctors were sceptical.

I hope your tests get done soon and you get sorted. Just wanted to let you know I understand how wretched PT is -especially in the sleepless hours early morning. Also encouragement- it can disappear as suddenly as it arrived- early days still for me without it but fingers crossed.

Please let us know how you get on.

All good wishes.

[PMRpro Ambassador in reply to Maisie1958]

Did the PT disappear after starting pred?

[Maisie1958 in reply to PMRpro]

Hi, I’ve been on pred for PMR since May2015 but was trying to get off once more when the PT started. I did go up to a couple of mgs daily then 1daily which seemed to coincide with lowering the volume as I had started getting night sweats again. I stayed at 1mg daily while on holiday last month-it was the second night in Delhi I realised that my whoosh had gone! Maybe sensory overload or just fear of the traffic. Long may it continue 🙂

[3daysinjuly in reply to Maisie1958]

I hope so. My pt always is louder and faster when I am stressed. Of course, it is the heart beating. Much worse since the PMR came on and pred.

[Maisie1958 in reply to 3daysinjuly]

PT is certainly horrid. Ironically mine started up out the blue when I was feeling the best I had for ages so was rather cross when the GP and ENT were asking about anxiety/stress/migraines.

PS Just make sure they look at your inner ear (IAM) on the MRI , I’m sure they will but double check. I thought they would have included my neck in my MRI the ENT guy ordered but they didn’t so I ended up having a CTA of neck and top of thorax a few months later. Lesson learnt for me not to assume 😉

[3daysinjuly in reply to Maisie1958]

I just read the script and it says mri/mra head contrast. I guess that does not include neck.

[Maisie1958 in reply to 3daysinjuly]

ENT consultant was nice enough but seemed to want my PT to be down to an acoustic neuroma or migraines-fortunately not. Referred to cardiologist who was excellent and ordered CTA neck & chest but probably should have been referred to Vascular person. It’s a mine field out there.

[3daysinjuly in reply to Maisie1958]

Was yours worse lying down? Mine is awful when I am lying down.

[Maisie1958 in reply to 3daysinjuly]

I woke up with it on the 4th July-nothing heard at the 5am toilet trip but opened my eyes at 7.30am and thought “That’s weird...” so loud! It was worse when laid down though maybe only more aware of it. Moving my head/neck didn’t seem to make a difference to the tone.

Even now I’m still listening to see if it’s there-can’t quite believe it’s gone.

[3daysinjuly in reply to Maisie1958]

Lucky you. PMR gone, too? I just started, really.

[Maisie1958 in reply to 3daysinjuly]

Um -have been in Club Zero briefly twice in the last year but no don’t think PMR has gone sadly. Ive had a comparatively easy time reducing Pred -thanks to this forum and was lucky that I don’t work or have to be a carer so could be pretty selfish and rest when needed. It does improve as time goes on honestly x

[3daysinjuly in reply to Maisie1958]

The mental/emotional side of this ordeal, for me, is worse than the physical. Every day I think about something pre-PMR and that which I don’t have anymore. I mourn that life. My old life. But who doesn’t, right?

[PMRCanada in reply to 3daysinjuly]

I too had the most difficult time with the mental/emotional impacts of PMR and pred. For 5 months prior to diagnosis, as my symptoms worsened, my fear and anxiety increased. The pain was awful, but it was the dark thoughts rolling around in my head that was the worst!

After diagnosis I was a bit relieved, but then started to worry about pred side effects, which lead to a feeling of panic and being overwhelmed by it all. I was very angry at times, comparing my new life with PMR to before symptoms emerged. I had just retired at age 55, and had also just got married and moved. This was NOT the retirement I had worked so hard for. I missed playing golf and tennis, dancing, having sex, missed eating whatever I wanted. Felt like a 70 year old trapped in a 55 year old body.

I eventually came to accept the cards I’ve been dealt. That brought some peace. I knew I could not control PMR, but I could control my diet, activity, rest, and who I shared with to get support (my husband, adult kids, Therapist, and the fine folks in this forum). The pred causes some mood swings, so I work hard at taking space if I’m really not feeling myself.

The hardest is the adjustments I’ve had to make are in my relationship with my husband, who at times doesn’t recognize me as the woman he knew before PMR. He has gone from lover to caretaker, and this has negatively impacted both of us.

7 months in I can say things are better. I know that stress is terrible for PMR so I try not to get too upset. I’ve developed more patience and compassion. I hold onto the fact that eventually this condition will burn itself out, and this sustains hope. I repeat the word “temporary” often. I still get sad, and cry, and that’s to be expected I believe as we navigate new waters.

Mourning the loss of our former life is a reaction that is normal, as is the other feelings we experience like denial, anger, bargaining,depression and acceptance (just like Ross’s 5 stages of grief). Feel what you feel....it’s all part of the process. Be assured, you are not alone. We are all right here with you, we understand your challenges, and will celebrate your accomplishments because we have a lived experience if PMR/GCA. We get it and empathize with you. Take good care and post anytime you need to, we will be here for you.

[3daysinjuly in reply to PMRCanada]

Thanks. I can relate to everything you said. Except the spouse part. My ex-wife has not even bothered to make a single inquiry about me although she knows. Ticks me off a little. But my loving daughter calls me every night. The Brits seem so much more stoic and stiff-upper-lipped about their ordeal. God bless them! I have always worn my emotions on my sleeve and always will, I guess. Thanks for your nice reply. Funny you mention eating whatever we wanted. Today I would have driven to WaWa and gotten a 24oz coffee, a breakfast sandwich, and a blueberry muffin. And been in heaven. This is what I mean....the little things. Well, thanks for the chat. It means a lot to have this place to turn to.

[Telian in reply to 3daysinjuly]

It's just the head. They'll ask you if you're allergic to iodine and if not you should be okay.

[PMRpro Ambassador]

Did the PT and PMR/GCA symptoms start about the same time?

[3daysinjuly]

As for me, my pt started right after my whiplash. I read that whiplash very often causes tinnitus. Of course, I can’t help but think that 5 months later I get PMR. Or did it get triggered right then and there?

[PMRpro Ambassador in reply to 3daysinjuly]

You do have to wonder...

[Grants148]

Thank you for your reply,l had the tinnitus about eighteen months before the PMR,l think it was connected all along because my GP has said the PMR is nipping the blood vessels in my neck which causes my pulse to miss beats sometimes,l am alerted to this because the tinnitus becomes irregular.l have found this very scary at times but it never seems to do this when l have an ecg or heart monitor.l seem to be stuck with it and l am afraid to try lowering my dose of Pred again because it seems more settled after increasing my dose after a recent PMR flare.lt is possible that your PMR was triggered when you suffered the whiplash ,it could have caused inflammation which gradually spread resulting in PMR,as PMR pro has said,you do have to wonder.

[3daysinjuly]

Thanks for replying. I get the skipped beats and have for years. And as you said, we can now hear that pause in our ear. I had an ultra sound of my neck and they said there was a little blockage but not worrisome. But when I bring my chin down to my neck the sound is definitely lower. Well I will have those 2 tests done. The noise is hard to take on top of the other thing we have.

[Telian]

My son and husband have tinnitus - son was in a band and his stems from that, he can't sleep unless there's low music on as silence means he can hear the ringing too loud. Hubby uses a CPAP at night so same theory really - low noise helps them both.

Best wishes.

[3daysinjuly in reply to Telian]

Thanks. I use a fan. But it doesn’t always work for PT.

[Telian in reply to 3daysinjuly]

That's true it's what works for you.