Tests, test and more bloody tests!

[Sher78]

After years of managing the dreaded lupus/APS migraines really well with Maxalt, I have started to suffer with cluster headache (which nothing seems to touch!) so obviously considering my medical history, the fact I have previously has a stroke, clots and am on warfarin, they want to do an MRI tomorrow just to check everything is ok (lupus turned cerebral about 12 years ago). I'm not concerned to be honest as I'm not feeling any worse than usual in general. Also, (sorry fellas!) due for an ultrasound in the next few week; I have been on a period for 3 months straight now, extremely heavy (we are talking changing a tampon at least every hour and losing clots every time. The only break I get is when I take Norethisterone and then it only lasts for 3 days, then I start bleeding like a stuffed pig again! I just feel like a walking blood machine at present. I also have Lichen Sclerosis (these damn AI's LOVE to bring their friends to the party!) so the constant bleeding is making that flare like an absolute beast. Luckily, I'm not quite at the anaemic level as of yet (thank God for the iron supplements I take for RLS!) but it is so draining! Haematology is pushing for me to see gynae but the waiting lists for any hospital referral here is crazy at the moment (haven't seen my rheumy for 14 months when I am supposed to see her every 3-6) due to such a huge backlog. Also waiting for dermy referral yet again...it's just never ending at the moment, plus waiting for the daughter's referral for rheumy and Gynae to come through (hypermobility, possible hEDS, possible APS or some other AI & possibly LS too!). Just feel so frustrated with how long everything seems to be taking these day, but hey, at least I'm breathing 😃

[Lulamay7]

When i was 42 my periods started sgwtting closer together and a lot heavier,by the time i was 45, I had a period for a week then a week off then period for a week for over a year. I was anaemic. Saw a gynae and had an endometrial ablation. Haven't had a period since. Best thing ever! On hrt now and still anaemic but under control with iron supplements. Have you thought about going to A&E, sometimes they can deal with things quicker.

[Sher78 in reply to Lulamay7]

A&E wait times are ludicrous unfortunately (I was up there 8 hours with a suspected clot recently which was crazy considering my medical history!). Just hoping they hurry up with this ultrasound so I can at least leave the house without worrying. I had to rush home after my MRI because I could feel myself leaking while I was having it 😞

[Olderkitten]

Dear Sher78 I think with 3 months of constant bleeding you need to go to the hospital emergency room before you do become anemic, there's only so much a vitamin can do and it could be the reason for the headaches. It's terrible to have to wait so long for help when you don't feel good and it could be life threatening! You need to take care of yourself so go to the hospital and get help please 🙏.

[Sher78 in reply to Olderkitten]

See my above reply about A&E. I have monthly iron checks anyway because I'm on iron supplements as I can't retain iron.

[Olderkitten in reply to Sher78]

I guess I missed the A&E thing

[Sher78 in reply to Olderkitten]

Easily done 🙂

[Sher78 in reply to Olderkitten]

Ultrasound for the bleeding has come through (finally!) for this week.

[diane1428]

rry your having such a dreadful time. Eons ago my periods were the same and had a hysterectomy but this was before I was told I had SLE/aps. Cluster headaches were the norm yuk. Have your MRI so they can rule out other triggers. You do need to see a hyena. Know the wait is long but it will be worth it. Keep your chin up and best wishes

[Sher78 in reply to diane1428]

I take it you mean Gynae and not a laughing cat To be honest, the MRI results don't worry me, I think they are doing it just to be sure there is nothing untoward going on.

[rafael in reply to Sher78]

Me again 👋. How did they diagnose cerebral lupus? I’ve been in and out of hospital for the whole of this year. I have been suffering from dizziness and jerky movements for no apparent reason and no pattern which caused some horrific falls. Broken right leg fibia, broken femur and hip on my left leg and then right wrist and forearm So 3 operations later they still can’t decide what is causing this dizziness mr brain mri came back ok I was told

Be interested in your thoughts

[Sher78 in reply to rafael]

Various symptoms, followed by several different scans and a lumbar puncture. It's tricky because brain fog etc can be 'normal' lupus behaviour for many anyway. I had all the bog standard stuff like headaches, brain fog, dizziness, plus feeling "out of my body", awful co-ordination severe mood swings, personality changes, hallucinations, diagnosed with psychosis etc (probably more I've forgotten to add but it was 10 years ago and to be honest, my brain is crap at remembering things). The only criteria I didn't hit was fits or seizures (which are also something they look for).

[silemoran]

Sorry Sher I cannot help you as I don't suffer from cluster headaches. Hope you will be better soon. regards Sheila Moran

[Sher78]

Got MRI results back. Although Doc says all is fine, I have had a look at my results myself and came across a note that says since my last MRI 8 years ago they note that a "Microhemorrhage is noted on the left external capsule region" and an "Incidental note of a development venous anomaly in the right frontal lobe". Ok, so that's normal? Quite confused so will be checking with GP and questioning what all this means.