Hello lovely community, I was in hospital yesterday with a flare-up; we now think it was an atypical migraine. But it looked a lot like past episodes I have had.
For the past few years I have had recurrent unexplained heart episodes, where my heart rate goes up and stays elevated for hours at a time. It is usually accompanied by other symptoms including headache, nausea, shortness of breath, chest tightness, dizziness, tingling in hands, extreme fatigue, confusion, teariness, shaking and sensitivity to light, although these symptoms do not always appear together. I have been investigated thoroughly for heart and adrenal problems, my heart is normal, and at one point they thought I had an adrenal tumour, as my adrenal hormones were significantly raised, but the MIBG scan came back normal.
Yesterday’s episode was also accompanied by sensitivity to sound and, strangely, I thought I could smell burning about 2 hours before the migraine hit. I got checked out thoroughly—in the past, I have had elevated troponin—but yesterday everything came back clear. I am now at home, resting.
Anyway, the migrainous-type symptoms got me thinking about my menstrual cycle, as I am one day away from my period starting. I recall that past episodes have, at times, occurred one month apart, which did have me thinking about the connection with hormonal activity. But that thought got lost in the ether of cardiologist appts and heart monitors. But now I’m thinking about it again. It’s possible I’ve been having menstrual migraines all this time.
Does anyone have any experience with this? All insights welcome. Thank you x
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MusicalFurbaby
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Hi. A major trigger for my migraines is hormonal. Also low blood sugar levels. I started out at 10yrs old with classic Migraine. Over the years I've experienced different types of attack.
Hi MF,I did have Menstrual Migraine before being diagnosed with SLE. They were very severe ones- one sided migraines which effected my right side of the body well thought I did .until it got really bad and I was having it daily in a day several times a day until I was having a stroke which paralysed my right side of my body.i had numb right face , unable to write , my speech / and understanding were all in a jumble- I just could not come out with the right word I know what I want to say but my brain will not allow my mouth to say it🙄. Weakness all on my right side. When I started my migraines drugs and when up high enough the dose it was only then we could see that they were coinciding with my menstrual cycle . They tried to put me on hormonal meds-by then I was nearly being diagnosed with SLE I had to stop because they found out I had fibroids and I ended up having my hysterectomy - infected Fibroids which by then I was already diagnosed with SLE .
So long story short ,.
Topiramate high dose helped to reduce my migraines but not eradicate it but Hydroxychoroquine did that . I still do get the occasional migraine which link with my flare up which my consultant Denys there is any link with my SLE.🤷
Wow, those migraines sound full-on! Glad you’ve experienced an improvement since then. Thanks for sharing—I’m already on hydroxy, but I’m also on OCP, so we’ll see what my doc has to say about that. I also have endometriosis; maybe it’s time for a hysterectomy?!
We have similar history KnitSewPurl .Same migraine with aura after working in my office under fluorescent lights and extress, and I was on topimarate treatment for 6 months.
Anemia, vitamin D deficiency, joint /muscle pain, rashes, mouth sores, hair loss, thrombocytopenia , lymphopenia, complement deficiency, etc...UCTD, Raynaud's and finally diagnosis of SLE. Hydroxychloroquine, vitamin D, B, C, folic acid due to my MTFHR gene, magnesium and Omega 3 fatty acids help me a lot with migraines.
Recently after an ultrasound they have also found adenomynosis which explains my painful heavy periods that nobody cared about before...
Hormones, autoimmune diseases, gut and brain... everything is very connected. ♀️
Thank you…yes, you are right, everything is absolutely connected! I’m already on hydroxy, vit D and K, and magnesium, so we’ll see what the doc says this Tues.
Once I had it removed everything stopped and settled down . Might want to consider getting another scan or MRI to make sure there is nothing else involve . When I requested for a hysterectomy - they refuse to give me one I was bleeding so much changing my pads so badly.
We had several consultation with another consultant regarding conservation because I was "young"to request for a hysterectomy. After looking at options it was agreed that there was no other option but to do a hysterectomy for me .hey ho , I felt so much better after that . Got discharged after day 3. Yup nurses were shocked I was walking day after surgery. Could not wait to get home to recuperate 😂. A whole new person. Also I self medicated when I was in the hospital. That is the plus side. Kept my meds in a locked cupboard by my bed.
That’s wonderful! I too look forward to the day when my periods finish; endometriosis has been giving me horrible pain from day 1. It’s the gift that keeps on giving. Sorry you had to wait so long for your hysterectomy; they really do baulk at the idea of doing them ‘young’, don’t they? If you don’t mind me asking, how young were you? I’m 43, so I’m hoping I have age on my side! One of the perks of ageing 😜
I was 45 when I had it done but the Fibroids was diagnosed several years before that. Took them that long!! To decide 😕plus had to fight and put in a PALs for delayed surgery I was moved to 18 months when I was bleeding non stop despite tablets . it was the first time I had to ever had to put in a PALs . So I was very glad of the hysterectomy ☺️☺️😂
Yes, indeed! I’m surprised they thought you were too young in your forties…smh…glad you got it done and that it’s making such a big difference to your wellbeing. I’m seeing my doc next Tues, wish me luck! 🤞
Yeh and also we were not planning to have any more kids as well we have 2 grown up daughters. Plus being ill and with my history of pelvis problems I was told no kids or else I would be paralysis flat out in bed. So , look at me now 😂 still fighting with the doctors with my hip and back ...and my gut issues all fun fun.I went through my meds today discovered majority of my meds had lactose in them!! I cannot take dairy or gluten🤷.on the phone to the pharmacist have to make an appointment with them next week about that it will be so interesting what the turn out . I also wrote to them as well . So will see
All the best with it. Yes I am also not planning to have kids. I am childless due mainly to the lupus and clotting risk, and some other risk factors as well (endo being one of them). Hope your hip, back and gut give you some relief soon.
UPDATE: so I saw the doc who agrees the most likely explanation is menstrual migraines. But because he’s thorough, he wants to rule out a bunch of other possible causes first. The upshot of this is I have a whole pack of tests to do: bloods, swabs, urines, a holter and a brain mri. And I might have to see a cardiologist and neurologist.
Ugh. This is why I’ve been avoiding the doctor! Sorry, had to get that off my chest. I appreciate my doc’s thoroughness, I truly do. It’s just so overwhelming when they give you a pile of tests to do all at once, and when they are ‘urgent’, meaning you can’t just do one a week and pace yourself. I came out of that appt and cried. The doc recommended I take time off work to do all the things. I cried about that too; I already feel so guilty for constantly taking time off work due to illness!
Since then, I’ve done the bloods, swabs and urines, and the mri is booked for next week. The holter is happening in 3 week. The swabs have already come back clear. I’ll keep you guys posted on the ongoing saga.
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