Cycle triggering migraines?

[CarolineAnne]

I have Hemiplegic migraines without the headache/ head pain. I had never suffered migraine until Perimenopause a few years ago. It seems that my only triggers are hormonal relating to my menstrual cycle. I saw a Professor Neurologist last year and he disagreed they were triggered by my cycle. ( he said only menstrual migraines were) he also didn't give me any treatment as I don't get the head pain but suggested vitamin b.

Anyway my episodes have increased lately. I had 5 on day 22 and 7 on day 23. Now I'm on day 7 and I have had one this morning. I am likely to get some more today and tommorow if it follows my normal pattern.

Does anyone have any info regarding hormonal causes. Before Christmas I did two months of testing sex hormones. Oestrogen and testosterone were low in both tests and progesterone was low and normal. Is it the surges, the fall in hormones or the being low? Is this something that could be helped with bio identical hormones? I thought the doctor I went to might help but if he doesn't even believe they are triggered by my cycle then I have to look elsewhere. I don't seem to have any other triggers. I have kept a diary for a while now but I can predict when they will hit due to where I am in my cycle.

Can anyone identify with this and is there any hope of eliminating them/ lessening them as they are seriously impairing my life lately.

I do have an under active thyroid and when starting treatment the migraines completely went away for months only to return again.

Thanks for any thoughts

[Hidden]

Hi. I can completely understand this! My migraines definitely fell at different times in the month and like you I also am of a certain age and have an underactive thyroid. I tended to get the visual migraines with occasional pain. If your thyroid gets out of whack, all your other hormones will follow suit. Bizarrely my migraines are well controlled when I take medication for my raynauds! I wish I could be more help to you. Maybe ask for a second opinion or to be seen in endocrinology? Hope you get some answers and relief soon.

[CarolineAnne in reply to Hidden]

Thankyou

[MaryF]

Hello I use bio identical hormones and I also have a slow thyroid (underactive) which goes with the migraines I have, as I also have Hughes Syndrome/APS which causes terrible migraines, sufferers often have a thyroid conditions. The migraines often start in teenage years, then go away only to come back again often other relatives have different autoimmune conditions and or early heart attacks or strokes and miscarriages. Anyhow if using bio identical hormones it is vital to use the right type as many are inferior. MaryF

[CarolineAnne in reply to MaryF]

Thanks for the reply. I actually have cousins with APS/Hughes. I have tested borderline twice on Lupus anticoagulant and a third time negative. Also had another test ( can't remember name) and that was negative. GP reassured me that I didn't have this. I didn't have migraines until early 40s when I thought I was entering Perimenopause, some 7 years after my thyroid diagnosis. Should I get retested do you think?

Can you recommend any good Bio Hrt doctors?

[MaryF in reply to CarolineAnne]

With the borderline testing I would be very very suspicious about this, tests only form part of the diagnosis. If you get any more symptoms you should seek further advice as it does run in some families. I tested negative for decades even though I have it, as did my later father, all my siblings and also my children. The tests are here: hughes-syndrome.org/about-h...

and the list of recommended specialists: hughes-syndrome.org/self-he...

and of course the symptoms and everything else of interest is on the charity website. I administrate the patient forum for them. The trio of disease is often Hughes Syndrome, Sjogrens and a Thyroid problem, with your family history remain very vigilant and be aware that neurologists are often dismissive about the syndrome. Here is a recent debate from the House of Lords, which is part of a drive to educate the medical profession due to the amount of work needed to be done to speed up education and diagnosis: publications.parliament.uk/...

I have sent you a private message re the creams. MaryF

[CarolineAnne]

Thankyou for all the information. I will look further into this. Another cousin has Lupus and Sjogrens. Thanks again.

[LK1123]

Oh my goodness. I'm so glad for this info. I suffer from hemiplegic migraines as well. I'm in the states and in a small town. I actually travel 3 hours to a bigger one for a better neurologist, but even he doesn't have a lot of experience with hemiplegic migraines. I had some abnormal blood work and was sent to a hematologist as well and she said it was possibly Reynauds starting or lupus anticoagulant and test again in 6 months as this time was negative. I do get the head pain though. I've tried everything and it all works a little but not completely. I do have hypothyroidism. Early heart disease runs in my family with my dad's first st 41 his dad at 43 and my dad and his dad having strokes. My heart rate is very high for unknown reasons. I can no longer work and yet I'm only 35 next month. I do have polycystic ovarian syndrome and don't ovulate. My hormones are very off balance. So - I don't have answers for you but you may have given me areas to look. Thank you

[MaryF in reply to LK1123]

Yes please do these tests: hughes-syndrome.org/about-h... and take the forms to the hospital as the samples taken are time sensitive: hughes-syndrome.org/about-h...

Also...here is the list of recommended specialists: apsaction.com/

Do stay on this forum, and the forum on HSF on HU has many members from the states. lots of us are on several forums. MaryF

MaryF

[CarolineAnne in reply to LK1123]

Mary has given us a lot of good info. Wishing you luck

[CarolineAnne]

I have been reading on the Hughes forum and have seen Gastroparesis mentioned. That is one of my biggest symptoms but I thought that it was from the Thyroid. Since tracking my migraine symptoms I found it occurred with those. Two weeks ago I saw a GI doctor who said it couldn't be Gastroparesis if it was intermittant but she said it was definately linked to the migraine attacks. ( My GP had thought abdominal migraine ) For me this is my worst symptom, it's like my digestion shuts down and I cannot eat or eliminate. I've actually lost quite a bit of weight due to it, ( which is no mean feat with a thyroid condition!) so to come across this symptom on the Hughes forum is very interesting and quite suspicious. I will definately ask my GP for further testing. Luckily I have an appointment on the 28th. Thankyou so much

[MaryF in reply to CarolineAnne]

Here you go: hughes-syndrome.org/about-h... MaryF

[Meggietye]

Hello CarolineAnne, I totally empathize with your situation as my near daily migraine began when I turned 39, and I am 60 now. I am having some really good luck since I switched over to a ketogenic eating plan...sugars fuel migraine! I found a new book called, " The Migaine Miracle " by Dr Josh Turknett last April and my life is really turning around. Josh was a migraine sufferer as was his mother and his wife & daughter. He switched over to a ketogenic way of eating for health reasons and a couple of months in realized he hadn't had any migraines..nor had his wife!

CarolineAnne, I highly recommend giving this a go..the book is not expensive, it is an easy read and thousands of people are getting results. There is even science based evidence this way of eating may be of benefit in preventing dementia. I do know sugar fuels migraine and it was the first thing I cleaned up. Josh is a Neurologist and many of his patients tried this way of eating and had tremendous results...it was his patients who told him he had to write this book and get the message out there for others to try. There is a Facebook community I belong too as well & the support is awesome! I wish you all the very best CarolineAnne...please keep up posted. I hope you find the keys to unlock the solutions to your migraine.

Meggietye

[alfie09 in reply to Meggietye]

I completely agree, I have suffered migraines for years and my hormones have always been all over the place. I have also recently cut sugar and most processed foods out of my diet and this (along with a daily dose of amytriptiline) seems to have reduced my migraines dramatically. Sugar is a hormone nightmare.

[CarolineAnne in reply to Meggietye]

Thankyou for this info. I will check it out. Glad you have seen improvements.

[195fifi]

ihave chronic daily migraines and have tried all medications with bad side effects botox injections nerve blocks inpatient iv dhe all of no benefit. I went to kings college in London and gave me a spring TMS machine as it is not available in Ireland. I have not had much improvement after using machine for 4 months .My neurologist wants me to come into hospital for 10 days for iv lidocaine He said i would become psychotic in hospital from the medication. I dont know what to do. Has anyone had this treatment. I would be grateful for any feedback. Thank you 195fifi.

[CarolineAnne in reply to 195fifi]

I am sorry you are suffering so. Maybe the information in Meggietyes post above might help you. It sounds hopeful. Best wishes

[195fifi]

i have chronic daily migraines since i was 12 years old. i am now 62. i have tried all medications nerve blocks botox inpatient dhe . i went to london to get a SPRING TMS machine as we do not have them in ireland . nothing has helped me. my neurologist wants to come into hospital for 10 days for iv lidocaine. he said i would become psychotic from medication while in hospital. HELP i dont know what to do . would be grateful for any feedback. ihave a lot of worry and stress as i look after my 93 year old mother with my brothers help. hoping for some replies soon. thany you.

[KaliC10]

Hi i have fibro and aps however i have always suffered horrendous migraines and headaches related to my cycle. This has always been the case. I know when they will come on and they are unlike my regular bad headaches and migraines. Nothing will shift them or ease them. I have to stay on the contraceptive pill because i can't take them along with my normal ones.

[Tia9189]

Hello, I was diagnosed with menstrual migraine 20 years ago. My Dr. said it was either estrogen or progesterone causing the problem (he was an obstetrician/ gynecologist, not a neurologist, and I am American). He started by giving me estrogen birth control pills, and I got a wicked migraine. He then gave me shots of Lupron Depot for six months, followed by ten years of Aygesten (progesterone) at various levels, and I was migraine-free for the ten years. I hope that helps in some small way.

[jaynie35uk]

My migrains are linked to my cycle and got worse when going through perimenopause and the menopause, I could set my clock by it...