I wondered if anyone had experienced exacerbated symptoms with the fluctuation of hormones associated with menopause.
Thanks.
@eternalsunshine my only symptom that got worse was not being able to sleep- I did not even know I went into menopause my gyno had to tell me. I had been put on natural compounding progest after my stroke which had stopped my period and I never got hot flashes.
Angela. What a bolt out of the blue on more than one level. Thank you for responding.
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@Angela4 I’ve now read your profile. Wow! You’ve been through the mill. I think statistical ‘likelihoods’ of living with rare conditions become meaningless once we’ve happened upon more than one, two or three!
I wonder how you are now; physically, functionally etc. Do you feel like going there?
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Either way, I hope you are well x
@eternalsunshine Well my life is much different since my first unrelated CVST stroke and the first few months I was paralyzed and could not speak. At first I was in a coma . So after slowing relearning how to talk walk and do math again I still have 24 /7 pain and even before the USA started to not give pain pills I am allergic to most. But I have a great team of drs who have told me that I have something called centralized pain syndrome. So I try to stay busy and distract as much as possible from the pain. I told God if I made it through I would help others which I do - I do feel very lucky as it seems I should of died from the first stroke and due the clots in my brain and my frequent flying to see my husband who was working out of state. We also have a collagen genetic issue in my family so we are kinda used to being the odd duck to drs. I get botox shots for migraines but finally they are also putting them where my stroke pain is as well and before covid hit I was getting ketamine infusions but Stanford has put them on hold for now. But I do take oral ketamine on really bad days. I live in California where marijuana is legal and my marijuana dr is also a neuro and gummies seem best for me to help with sleep and pain. I am still weak on my left side and sometimes will have a bad fall and really need to get back to doing my pilates - My brain damage is completely gone and after being on the marijuana gummies just for a year my brain shows no signs of the two strokes I had which is weird my dentist thinks its the marijuana gummies. They never make me feel high and I am a light weight. I also take LDN which helps with sleep and pain. I still have some of my DAVF but what is left they are afraid to touch cause it could paralyze me again so we are in a watch and wait . I think what helped me mentally was mourning my old self ( which was a super sports active woman I played tennis golf swam and was evan on a softball team. I tried joining a senior league even though I am not a senior for Pickle Ball but they are so competitive they gave me a black eye and I fell twice so my stroke dr told me I had to quick (LOL) I kept telling them I may look fine but I am not and told them about my stroke but they really took the games seriously! I just wanted to play for fun and get some exercise.
I agree once you have rare conditions you are in a different lane and it seems we get many more rare things. Thankfully my husband has gotten used to all my rare health stuff and knows if I am feeling something its not good. I miss my old job and I think that was the hardest thing to come to terms with but I had been working summers and Christmas since I was 10 - and then part time since I was 16 then full time since college- How are you doing? are you having a pain?