Chronic trigeminal migraine

[Lovecavatese]

Hi has anyone, out there like me, been ill with something like Covid or could have been Covid a few months prior to 2020 Jan when it was announced.

It’s over 4 years for me now since my life changed and I became so ill I couldn’t get my head up from our settee. As well as a Fibromyalgia , major bowel issues, chronic migraines have evolved recently to my face. I have a high heart rate and low blood pressure, but we are trying to lessen the attacks as they are like nothing else. Currently starting on 2mg. Candesartan which will lower my BP more, and already has. The strangest thing is it has left me feeling ok today, has anyone had anything like this or had heart issues since Covid? I’m baffled that I had a good day.

[Callred]

Yes - I believe I had Covid in December 2019. I had respiratory problems and was rushed into hospital. At first they diagnosed pneumonia but it was a very different pneumonia to what I’d had before. My discharge notes referred to a SARS virus.

[Lovecavatese in reply to Callred]

Thank you for your reply . I hope you are coping well, hugs to you

[erasurefan]

I read your post and my goodness did it resonate with me! I believe i had covid early 2020 very very unwel for weeks. My life has changed ever since. I like you have now been diagnosed with fibro, and trigeminal neuralgia, have major bowel problems and been hospitalised with heart problems. Must also mention that i can now barely eat anything, no dairy no gluten, and so the list goes on. I was a healthy working person with the only slight issue being arthuritus. This has worsened dramatically in the last few years too.

So yes unfortunately there are more of us out there that appear to have been affected Sending gentle hugs xx

[Lovecavatese in reply to erasurefan]

Wow, yes that’s it! The food issue, I have to be very careful about portion size, I eat hardly anything all day then at 3 ish eat a small meal. It’s as if my body is too exhausted to manage digestion.

I hope you don’t mind me asking , what have they given you for your migraines, and does it work ? I won’t be taking Candesartan again , I only took 2mg , it lowered my BP to 104/74 then this morning my heart beat was accelerating so fast that I was in such a panic I had to try a trick my nurse daughter told me. She’s an A&E nurse and said A&E is full of people with rapid heart rates. That goodness the trick worked the second time I did it , and my heart beat returned to normal. Felt a bit groggy for a bit but no more Candesartan for me. Rang my docs, they gave me an appointment for 2 weeks time, they’re so pressed now that near heart attacks are not a priority. Just glad I’m still here. And glad you are too. Hugs back x

[LunaBess in reply to Lovecavatese]

hi, can you tell us the ‘trick’ please

Hope you are feeling well. I fell ill in November 2019 and things have never been the same. Diagnosed with hypothyroidism, IBS, migraine attacks, fibromyalgia and more recently I lost balance and sprained my ankle and have another illness to add to my collection called Menieres’ disease after having covid again December 23 and have now suffered daily with migraines with aura, deafness and balance problems. I wish I was normal but I am just trying to stay positive and carry on as best I can. I was prescribed Bedranol and Co codomol for my migraine but I am still getting it everyday, sometimes twice.

I have a Gp appointment next week so I will see how that goes, not looking forward to it to be honest as I just feel as though I am being treated like some sort of burden.

[Lovecavatese in reply to LunaBess]

Hi Luna Bess, I don’t know what the trick is sorry. But do know we are not a burden. I had to pester my GP, but just screamed for help since my illness started. I too have balance issues , sometimes I walk like I’ve just been spinning around a pole, in a dizzy state , keep falling too. Last time slipped in bathroom and fell as flat as a kipper onto my belly, hurt my wrist and my arthritic elbow but haven’t managed to tell the doc as my heart keeps going crazy on me and that’s my priority atm. I’ve started to collect animals I probably shouldn’t but they entertain me and give me love I don’t get as not really mixing. I think these are tough emotional times for most, with finding friends difficult when they just don’t understand. Sorry blabbing on like a diary. Have a good day and keep on at your GP or they will leave you to it. They’re just so overwhelmed now.

[LunaBess in reply to Lovecavatese]

Thank you, you’re not alone if you have animals. I’m the same, a huge animal lover which keeps me going. I wish you happiness and send lots of well wishes. Let’s beat whatever this is and live x

[worried4me5]

Hi,

I haven't had Covid that I know of but I was just wanting to know if trigeminal neuralgia pain is like having a giant toothache in your face?

I was on a waiting list for an appointment with neurology but don't know when I will get one since the strikes have put waiting times off.

Can anyone give me any information about what happens to you and if it's different for some or the same?

Thanks

Ang x

[Lovecavatese in reply to worried4me5]

Hi, tbh I would just explain to any good GP what is happening and what is affected. They are the best to comment in the meantime while you wait. I just know mine have evolved from a usual migraine which I have suffered with to something off the scale. Many areas affected. Toothache can be heart issues, or neck issues or ear issues.

Hope this helps