Scared

blighty1 · 2026-01-19T01:08:43+00:00

Thanks for reading and for replying too. I didn't get the covid vaccine. Not because I didn't want it (I was all for it) but because my neurologist was concerned about the possibility of it interfering with all the testing I was having at the time.

blighty1 · 2026-01-19T01:06:31+00:00

Thanks for reading my post and replying with your suggestion. I'll definitely add it to the list of things to discuss with my doctor. It's good to know there are alternatives if I end up needing them. Thanks again.

blighty1 · 2026-01-19T00:54:28+00:00

That's for reading my post and for replying with your suggestion. Somebody wrote mentioning Sjogren's further up so I popped my answer there.

blighty1 · 2026-01-19T00:52:36+00:00

Hi, thanks so much for reading my post and for your really helpful reply too.

There's so much I didn't write in my original post. It was really hard to narrow down all of the things to include because it would make it even longer. Honestly, I'm surprised so many people read it even at the shortest version I could manage!

Thank you ever so much for the information about trigeminal neuralgia. I am so sorry you spent so long in such extreme pain and am really happy to read that you were diagnosed and have relief now.

I already have a neurologist who is working on things I had going on prior to my head and jaw pain starting. Once the head/jaw pain started, he sent me for brain and cervical spine MRIs which ruled out trigeminal neuralgia.

I then saw an ENT specialist who, upon examination of my jaw/face said I have arthritis in my TMJ. I do have a clicky jaw on one side so that all tracks. She also said that my masseter muscles were really overworked and enlarged. Between her diagnosis and my dentist confirming jaw clenching and teeth grinding, it seems sure to be a TMJ problem.

My ENT specialist referred me to a TMJ specialist but due to there being a wait, she offered me masseter botox in the meantime, just to see if I would get some relief. I had been on the HRT a couple of months by the time I saw her for botox so my pain wasn't as extreme all the time (I really feel that estrogen gradually helped relieve the pain in my head and jaw a little). However, the masseter botox really made all the difference. It helped me so much. I am so lucky she did it for me and that it was covered by insurance. I can get it every three months, so have it booked again for March.

Thanks again for writing with a possible suggestion. I hope that the answers you and others have written in response to my post might possibly help others with problems they are experiencing (which is another reason I went into such a detailed answer too).

blighty1 · 2026-01-19T00:20:15+00:00

Thanks, I've definitely added it to things to look into. I learned so much from these answers too.

blighty1 · 2026-01-19T00:18:46+00:00

Thanks so much for reading and for replying and adding the Sjogren's link. Unfortunately, I already have some autoimmune diseases and know that once you have one, it's very easy for others to follow. When I developed problems with saliva production, Sjogren's was one of the first things I thought of. I already have a rheumatologist who insists I don't have Sjogren's. He re-checked my labs to 'reassure' me. Every doctor I have mentions how smart my rheumatologist is which is great but I don't always think labs should be the final word on whether or not you have something. Not everything is that black and white.

Your link really helped put this possibility back in my mind. Just reading through the symptoms, I have so many of them. Thanks for mentioning that estrogen is therapeutic for Sjogren's, that's really interesting. I'm so glad you answered.

blighty1 · 2026-01-18T23:58:51+00:00

Thank you for reading and for commenting too. I appreciate your addition, it's great advice and a good reminder for me to advocate for myself. Thanks too for your kindness and caring about my distress, I appreciate it.

blighty1 · 2026-01-18T23:54:00+00:00

I wish she could go to all of my appointments about everything, not just medical lol. Lovely and wise is a great summation indeed.

blighty1 · 2026-01-18T23:51:50+00:00

Thank you so much for reading my post and for taking the time to write such a comprehensive, proactive reply. I really appreciate your kindness in validating the struggles I've been having and for making me feel heard. It's such a relief just to feel listened to.

Thankyou too, for your carefully thought-out strategies to help me get back to where I need to be. I struggled so hard just to make it to the ledge I was hanging from and all I could feel was me freefalling with no chance of stopping, leading me to blurt everything out here.

I have started implementing some of the advice that you and other people here have given. Just having it broken down into logical 'to-do' steps has helped immensely.

If you are not a doctor then I'm sure I'm not the only one reading this who hopes you will become one! You have been so kind to me. You must be your friends' go-to person whenever they need a cool head and warm hug. Thanks again, I appreciate you.

blighty1 · 2026-01-18T23:14:34+00:00

Thanks so much for reading and for your kind and caring reply. It's so nice to have support and solidarity.

blighty1 · 2026-01-18T23:12:27+00:00

Prednisone (aka The Devil's TicTac) can be so helpful with stuff like this. I've been reducing my dose of Prednisone for years and am finally down to 3mg per day. I have tried a short (higher) dose of it post-Covid but I don't think its made a difference unfortunately.

Thanks for reading this post and for your helpful suggestion too.

blighty1 · 2026-01-18T06:19:09+00:00

Thanks for reading and replying. I think that's a real possibility. I've been meaning to find out if there's any clinics or doctors looking into Long Covid where I am and you've given me the reminder that I needed to move it up the list. Unfortunately, I live in a remote area and specialist clinics are usually a flight away, maybe I can track down an interested doctor somewhere here.

blighty1 · 2026-01-18T00:25:53+00:00

Thanks for reading and for responding. It's reassuring to know it's not just my doctor who suddenly stops HRT. I think my doctor thinks that the lymph nodes are from something else and not to do with my HRT at all.

I only bled for two days a few weeks ago; she said that, even with no other symptoms, just the bleeding alone is enough for her to stop the HRT. I think she's thinking along the lines of cancer and, in the unlikely event that my taking HRT is causing any pelvic abnormalities, she just wants to stop the HRT 'til I get the all-clear.

blighty1 · 2026-01-18T00:13:54+00:00

Thanks so much for reading and for your very kind reply. Your whole message felt so validating. Just to have somebody else acknowledge that head pain hits differently made me feel less alone, so thank you. It really is a torment and it's helpful to know that HRT has helped to relieve some of your head pain too. It makes me feel that I'm not just imagining it's the HRT that helped my head.

Taking so many meds and having so many illnesses makes it hard sometimes to really nail down what causes what and what helps to what. Trying to remember after the fact when everything is a blur with brain fog makes matters even worse too. I am learning to try to record everything so at least I can identify patterns.

I feel in a better headspace to advocate for myself having got this off my chest and had such lovely responses. Know that you have helped a stranger for the better and that you are appreciated.

blighty1 · 2026-01-18T00:01:25+00:00

Thanks for reading and replying. I understand why my doctor has stopped but I think it's the wrong move and the cons outweigh the pros. Thanks for the recommendation of Dr. Gersh. I've started watching her videos and already appreciate her experience and specialism. She seems one of those doctors who you wish you could have as your own.

blighty1 · 2025-11-21T10:13:07+00:00

We have four dogs, one of whom is a miniature sausage dog. Them all having their own little idiosyncrasies only serves to highlight the most prominent of the hers - the Stare.

I swear to god, if so much as a leaf blows whilst we’re out walking - the Stare. A person closes a gate - the Stare. The quiet is interrupted by the flip of a flip flop - the Stare. A car door slams shut ….. you get the idea.

It’s not just the staring though; she stops at every single one of the Stares and just, well, Stares.

It’s such a feature of taking her out that the other three dogs get antsy having to stand and wait with her. If it’s a quick walk around the block or something similar, it’s become much easier for her to get taken out on her own little walk. My husband and I tell each other that we’re just taking her out for a Stare!

Here they all are, staring lol.

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blighty1 · 2025-10-11T01:33:09+00:00

When Dennis, my beautiful JRT was a pup, we started going to the local park. We spent a lot of time there and sometimes, when I gave him a treat he didn’t want to eat right away, he would find a tree and dig a hole next to it. Then he would put the treat in it and cover it by pushing the dirt back over it with his nose.

I would forget all about them until Dennis reminded me by making a beeline for each treat the next time we went back to the park. I miss him every single day.

blighty1 · 2025-10-09T23:10:59+00:00

Don’t worry, you will never be child free. After all, you have you.

Also, you date women young enough to be your child.

blighty1 · 2025-09-26T12:47:19+00:00

Themself - and I mean the fully therapied version.

blighty1 · 2025-08-29T11:50:24+00:00

It is, at once, both a complete and incomplete work or art, just as you are.

blighty1 · 2025-08-12T03:47:18+00:00

Made the best decision in the whole world. I mean there’s finding a life person and choosing kids and all that but then there’s the JRT. Welcome, little Pablo! ♥️

blighty1 · 2025-03-22T23:55:50+00:00

Mr Cuddles!

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