Dear friends, I hope you are all as well as you can be and I just wondered if anyone could provide any advice?
Re: headache, GCA has been ruled out as ESR and CRP levels are normal, wondering if it could be migrainous? I am slightly nauseous and not that keen on food at the moment. OTC pain relief doesn’t make any difference. I take the occasional Tramadol when the headache sometimes wakes me in the night and that seems to help a little. I am light and audio sensitive anyway and only change in meds is from Omeprazole to Ranitidine 2 weeks ago to help with gastric issues: current diagnosis UCTD. I have a GP review in 2 weeks to discuss further and if I still have the headache, wondered if a referral to a headache clinic would be of any use? Anyone any experience of this?
The tremor - I have this round my face, eyes and jaw and inside my trunk for most of the day. It comes and goes. I always have it quite strongly, where I physically shake, upon surfacing from sleep; from short day time naps and when waking from a night’s sleep in the morning. No tremor in arms and legs, it’s jut my face and core body. I saw a neuro and through blood tests ruled out Myasthenia gravis and APS. I also had an EMG and nerve conduction test which proved normal. I do have the usual brain fog and fatigue along with mild balance problems and bouts of dizziness. Recently and rather strangely, I have become more left-handed!!
Any thoughts most welcome! Thanks for reading xx
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Approximately 1 in 5 patients with GCA or PMR have normal range ESR/CRP - it doesn't mean they aren't raised for them, just that thier personal normal may be very low. My ESR is 4 - so trundling along at 16-18 meant it was very raised but was unoted because up to 20 is perceived to be fine. The doctors appear not to understand normal ranges and bell-shaped curves and distributions ...
Has your doctor tried treating migraine? Your discription does have many classic symptoms of migraine. I would most certainly go on to the headache clinic.
I have history of migraine with aura. Mine have recently improved greatly, a result of age or maybe having a hole in my heart close, but mine did come in long bouts followed by long times of remission. I had some food triggers but mostly weather pressure was my main trigger.
Please do ask for the referral for headaches are treatable and very debilitating. Hope you feel better soon.
I have jaw pain rather than headaches just now but after a bad fall in 2018 I had 3 months of severe headaches and terrible light sensitivity with severe nausea. The only way I could get shot of them was by lying down in a darkened room. The departed as suddenly as they came and the rheum and neuro blamed my severely bulging cervical discs. I decided that they were more likely a Cerebral Spinal Fluid leak that self healed.
If you have no history of migraine then all three neurologists I’ve been under say that it’s very unlikely that we develop them in mid to late adulthood
Re the internal tremors I absolutely do suffer from these as well - in just the same areas you describe and also worst immediately after waking.
I have stages when they ease up and others when I feel like my adrenal glands must be shot from the severity. After bad experiences with neurology I’ve given up reporting this horrid symptom to any doctors now and have decided on lymphedema or something vascular or endocrine or both. Raising my daily dose of Levothyroxine by 25mcg has helped to ease the shakes and benign essential tremor - which is pretty telling for me I guess. I think I’ve been under medicated for a long time now and the endocrinologist agreed. Also there’s autonomic dysfunction and I’m newly glucose intolerant so think this is a factor too probably.
Had thyroid blood tests this morning and expect a GP will phone and try to tell me I’m taking too much but thinking of the internal tremors - I’ll fight like crazy if they do!
I do have very high inflammatory bloods always now so I think inflammation plays a part but I know that it doesn’t always show up this way so I’m “lucky”.
I’m waiting on tests for pulmonary hypertension - lung function tests next week and an echocardiogram at some stage soon-ish. If nothing shows then I’ll just have to carry on wondering. I know the neurologist was keen to blame anxiety “FND” and I was keen not to let her. This is one of the main reasons I’ve not reported this symptom since the first time I saw her. How sad an admission is this?!
I tell you my version of this in case any of these possible causes chime with you too 🤷🏼♀️xx
Thanks Twitchy for your detailed response and yes a few things do chime with me, especially avoiding Neuro appointments! Often I have felt like a specimen on a Petri dish and being viewed with disbelieving looks coupled with the “Not you again” body language as I walk through the door! Hence when I had the blood tests for MG and APS I went privately to a Neuro who specialises in autoimmunity and recommended by a friend in this forum. He totally got me and was very kind. Anyway, I’ll mention thyroid and get this looked at too.
Interesting that you mention autonomic dysfunction as I have difficulty swallowing, dysmotility and other gastric issues along with low blood pressure and dizziness. I had Scleroderma ruled out last year as with these symptoms along with sicca and Raynaud’s style symptoms, it was looking like a possibility. It’s all such a jig-saw puzzle with masses of overlap and trying to find a path through it all is tricky and tiring.
Good luck with the lung function tests next week and I hope you get some answers soon xx
Thanks. I’m feeling strangely reconciled to not getting further answers just now and to just blaming everything on my Sjögren’s - even the limited scleroderma, vitiligo, Hashimoto’s, precancerous lip etc.
There’s something about finding a new young rheum I like (even though the poor woman got very little chance to speak!) that is enough for me for now. And escaping neurology with a letter blaming all my neuro symptoms on Sjögren’s was good! 💃🏻
Plus the fact that I’m painting quite splashy paintings again when I’m not sleeping (the fatigue is massive just now). Or because my brain is trying to engage with applying for funding for an exhibition in March - so focus is on our work rather than on my health .
No appointments for 5 weeks now apart from lung function tests. Yippee!
So I just feel so much calmer. And no shakes/ internal tremors for a few weeks now yay!
Maybe it’s something as simple as getting back up to a higher dose of Levothyroxine because I seem to recall being on this dose before and doing better before my old GP reduced it.
Or perhaps it’s because I can even cope with the idea of a psychological component to my symptoms as long as I’m being taken seriously for the diagnosed biomedical stuff.
I just can’t bear the idea of any doctor diagnosing internal shakes (and vibrations!) as psychosomatic because they can never be sure and therefore they have no right. I can self diagnose it if I want because the symptoms aren’t visible and they are all mine! But doctors can’t tell us its psychosomatic because these symptoms don’t belong to them! It’s all about taking back control I feel. Xx
Looks like two different issues. Migraine for left side pain sounds about right. How many different migraine meds did you try? Different ones work on different folks. Not too many worked for mine and i ended up having botox for migraines and that helped significantly. Ibuprofen helps too but it really hurts my stomach so i avoid if as much as i can. I tried many different migraine meds, and most didn't work for me without horrible stomach pain. The tremor sounds bad. Definitely follow up with more docs that can figure that one out.
Thanks miccika, I’ll see if I can get some migraine relief from GP next week and see if that has an affect. Having read up on migraines, I hadn’t realised that they can be chronic and last for months, I thought they only lasted for a few days at a time. Yeah the tremor, need to get that investigated further, I think it’s gone on long enough now xx
I hope you are all ok during this very difficult time. I just thought I would update you on this and ask this lovely community a couple of questions.
Yesterday, I was diagnosed with GCA further to temporal ultrasound scan. I will be 53 in July, and symptoms include cracking left sided permanent headache for 5 months, scalp sensitivity, unintended weight loss, night sweats, low grade fever and increased fatigue. GCA was originally ruled out as I had normal ESR and CRP levels. The scan was conclusive. So now on steroids and in the high risk shielding category. I will of course need to be even more careful, washing the delivery parcels, not go off the premises etc. I still have the tremor and am waiting for Neuro appt in June for this to be investigated.
A couple of questions for you - does anyone on here or from the PMRGCA site have other autoimmune conditions such as Lupus, MCTD, UCTD, Raynaud’s, Sjogrens etc? I am UCTD and wondered how common it was to have other AI conditions in conjunction with GCA?
Are there any other complications I should be aware of? I have calcium deposits in my left breast and wondered about atherosclerosis as the GCA is on the left side of my head? Or am I being over cautious/getting concerned about the 2 being related or not? You know what it’s like...getting a diagnosis and then the shock of it and then working out what it all means...then all of this in the midst of Covid19. 🤦♀️🤷♀️🙆♀️Thanks for reading, take care wherever you are xx
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