Ladies with ET, I have a question about corelation of monthly cycle n ET symptoms.???

[mustabshra]

Hi,

I noticed a patteren of worsening my ET related symptoms(visual disturbance, dizziness, silent migrains kind of neurological symptoms plus increased fatigue) around my menstrual cycle. I feel it become worst almost one week before my cycle. Is there any corelation? Anyone else suffering same thing ? Any guideline to cope bcz my ususal coping strategies dont seem to help here. I am only on plavix, n my platelets are quite hight around 1000, so I am scared everytime am I going to have some neurological event or what??

[Betsywest]

Hi there, unfortunately I don’t have any advice to offer but I just wanted to say I have found the same. I actually have PV but exactly a week before each period now I suffer dizziness, fatigue & funny vision which were all my PV symptoms that sent me to the GP in the first place. Thankfully they all improve afterwards though! I didn’t suffer at all like this before diagnosis.. x

[mustabshra in reply to Betsywest]

Thanks betsywest.These symptoms appear first time after my diagnosis but resolved later after plavix and diet and excercise modifications. But yes I feel these symptoms now only around my periods n wen periods start I feel better in terms of neurological symptoms.Anyway thanks for telling me that I am not alone.

[UKZA]

Hi there, I no longer have periods as my uterus was removed 18 years ago, but do still ovulate. I have very similar symptoms and thank you for sharing as I thought I was going mad and imagining things! My symptoms get worse the more stressed I am but are not constant. I will monitor to see if monthly. My platelets have dropped from 1276 to just under 1000 after a month of hydroxycarbomide. Not really sure which symptoms are worse. Take care and know that you are not alone

[mustabshra in reply to UKZA]

I agree with u, stress also makes the symptoms to reappear sometimez for me. I also experience shortness of breath of chest congestion time to time. Had already ECG and Mri, everything was fine. We women are I guess more messed up as compared to men in dealing with our MPNS because we have to go through quite grossed up harmonal changes. Thanks for reply.

[Camelian in reply to mustabshra]

I had a hysterectomy when I was 32 I'm 57 now and feel I've been going through the menopause for 20 years plus😜I started suffering migraine at the start of the menopause and still have it to date. I guess I'm post menopause now although I still go through a monthly cycle of PMS symptoms including most of the symptoms mentioned above. It's very hard to say if the symptoms are related to ET or menopause there definitely seems to be a cross over. I find eating healthy and avoiding surgar helps. Also since being diagnosed with ET last year I've been drinking more water and that helps with the headaches. Hope you start to feel better soon.

[clubdino]

Hmm interesting. For several years the day before I would start my period I would have a sudden extreme dizzy spell and almost fainted a couple times. That went away over the years.