Parkinson's and Menopause

[fifthbird]

I'd love to hear from women diagnosed with PD or Parkinsonism who are in menopause or who went through it while also dealing with PD. I'm 54 and I've been perimenopausal for years already. But in the past few weeks I've been thrown by severe thermo-dysregulation (20+ hot flashes per day plus extended periods of chills where my body temp has dropped as low as 95.4F) plus elevated anxiety, epic and intense dreams where I sometimes scream or call out, and of course not sleeping well. Also, as you might gather, I'm a little bit irritated.

My MDS (neurologist) tells me to talk to my GYN and my GYN is doing her best but isn't well-equipped for dealing with the neurological and psychiatric aspects. (I'm also diagnosed Bipolar II.) It all leaves one with that feeling of being unreasonably divided into parts instead of seen as a whole person.

For better or worse, I can't do hormone replacement therapy because of a family history of breast cancer, and other meds used for hot flashes (gabapentin, SSRIs) are off the table for me because of bipolarity issues. Has anyone had luck with black cohosh or acupuncture or other methods of dealing with the collision of PD and menopause? If so, I'd appreciate hearing a little of your experience and what you learned.

Thank you!

Shae

[Rosenmu]

I had already gone thru menopause and had a hysterectomy long before my PD diagnosis. I went through the whole hot flash thing twice and now having slight issues again with PD. I don't do any meds for any of it, I try to eat organic and detox where I can, and take many supplements. You would be surprised at how many are nutrient deficient or toxic that have mental, nerve, emotional and anxiety issues. Have you tried locating a recommended naturopath in your area?

[fifthbird in reply to Rosenmu]

Thank you, Rosenmu. That's valuable feedback for me. I "see" Laurie Mischley, ND in Seattle (via video visits) and take supplements as she recommends, and also eat about 98% organic. Laurie hasn't seemed very interested in menopausal concerns and it's not easy to get an appointment with her -- my next isn't scheduled until January -- but I may call this morning to see if I can get an earlier follow up with her to discuss this specifically.

[Godiv]

Ah, the back and forth dance between doctors :(. I'm post menopausal. Whew, not fun! I was a beast in perimenopause and broke down after meno and used HRT, which I know you shouldn't.

I never tried it, but I've had one friend say acupuncture helped. Also, and if I missed this, I'm sorry: have you tried any of the over the counter potential solutions? Like you said, black cohosh, but there are OTC formulations that might help. I agree with Rosenmu: healthy nutrition and maybe a naturopath. Chiropractor? Some of them seem knowledgeable about supplements, nutrition, etc. There are also some women's holistic type clinics that take online patients. I've seen at least one place that makes its own supplements in pill packs for various symptoms. I feel for you; it's tough with everything else you're having to deal with. Hang in there!

[fifthbird in reply to Godiv]

Thanks for your thoughtful reply, Godiv. My GYN recommended acupuncture specifically. I've always been a fan of acupuncture but have been hesitating now because of COVID-19. I'm thinking of looking for referrals to acupuncturists who specialize in women's menopausal issues and then having a conversation about COVID protocols to see what they're doing. I might end up feeling comfortable enough. My GYN also recommended an OTC herbal product called Estroven. I tried the one that contains rhapontic rhubarb root and it caused serious GI distress and made me almost instantly weepy. Not good. They have other formulations, though, that contain black cohosh so I've got one of those on order now. Fingers crossed.

[Godiv in reply to fifthbird]

Oh good luck. It’s hard I know. That’s a great idea to question their protocols. Hopefully you’ll be able to find someone. I’m sorry the one formulation didn’t work. Yikes. That’s definitely not what you want. I hope the other one works for you. Fingers crossed and toes crossed since they’re curling up anyway LOL.

[Rosenmu in reply to fifthbird]

I have been doing in office visits since covid started, all the Dr offices are very careful about covid issues. I have to wait out side or in my car for my appt., Temp taken, etc.

[fifthbird in reply to Rosenmu]

Rosenmu & Godiv, I made an appointment with a local acupuncturist who specializes in women's health at menopause. Thanks for the encouragement!

[NRyan]

My PD ride started when I was 38. I have been through menopause with PD. I didn't take anything because each has health risks itself. I lived through it. I bought a waterproof pad and put it under me when I slept so I didn't leave a body print of sweat on the sheets. I have ice packs I slept with around my neck at night. I would wake up freezing due to being drenched in sweat, so I would strip and sleep in a short fleece robe with a hood to help get warm. Some of the intense dreams are more likely a PD symptom, not menopause. I never had any dream like that. It TOTALLY sucks but it doesn't last forever. Temperature/sweat dysregulation is part of PD so it never fully goes away. Eventually, it will be the least of your concerns.

[fifthbird in reply to NRyan]

Thank you, NRyan. It helps me to hear the intensity that you endured with hot flashes. Going through it, I find myself feeling that this can't possibly be normal, but then I hear stories from women who have been through it (even without PD) and I get it that I'm just going to have to ride it out. (I'm sitting here in my hooded sweatshirt right now, just having gotten through the early morning chills after hours of hot flashes prior.) I had another nightmare, too, where I woke up crying out and, I think, thrashing about a bit, so that's almost surely PD -- but how interesting that this PD symptom started at the same time as the hot flashes. Anyway, I'm going on! Sounds like I may be in the chute for a wild ride, tho. I'm going to speak again to my MDS and also try to check in with my naturopath, as I mentioned to Rosenmu above. Thank you again! I really appreciate all of you who have responded.

[NRyan in reply to fifthbird]

PD symptoms do get worse when menopause begins. Estrogen supposedly protects us a bit. I've toyed with estrogen replacement if it would help put off PD symptoms for a few years.

[horsplay]

look into glycopyrrolate, its been a great help for me.

[fifthbird in reply to horsplay]

Thank you. I'll look it up!

[Pnyldy]

Hey 5th - Not fun!

I started having REM sleep disorder (dreams where you yell and/or lash out) in my twenties. I had a total hysterectomy at 47 and was diagnosed with Idiopathic Parkinson's at 54. I'm now 61.

I began recently taking a product called GastroMend HP made by Designs for Health for an H-Pylori overgrowth. A happy side effect of the supplement was it stopped my bad dreams. I find if I stay on one capsule a day, I'm protected. You can Google and see what's in it.

I used to have hot flashes where I thought I would incinerate into a pile of ashes. Had the horrible night sweats and chills as well. I now take bio-identical hormones and am comfortable. I consult with a nurse practioner in Nashville TN that does nothing but hormone consulting. I do not have a family history of breast or any other kind of cancer. However, it's my understanding that there is a lot of new research, the volume of which an ordinary GYN or PCP can't keep up with that show hormone therapy actually protects against cancer, heart disease, etc. You might think about booking a telephone or Zoom visit with this consultant just to see what she has to say.

If you can get your sleep fixed, your anxiety might automatically decrease. I took Buspar for about a year and a half, but don't need it anymore.

Hang in there, Sister! Keep asking questions and networking. You will eventually find your answers. And, let me know if you want the contact info for the hormone consultant. Best wishes!!!

[fifthbird in reply to Pnyldy]

Thanks, Pnyldy! I'm so glad I've asked for feedback on this forum. Hearing all of your stories is comforting not just for the helpful suggestions but because I know I'm not alone. I agree with you that getting better sleep is sure to ease anxiety at least somewhat. I know I don't have H-Pylori (I was tested a while back when having persistent digestive issues) but I'm going to look up GastroMend anyway, to see what's in it. Bioidentical hormones, even in tiny bits, have put me into pits of depression in the past. But . . . yesterday I researched and found an acupuncturist in my county who specializes in women's health at menopause and I have an appointment with her in a couple of weeks. So that's some progress!

[LadySuR]

I am taking Shatavari powder, 1/2 tsp in the morning with warm milk and 1/2 tsp at night. Finally this is the only remedy got rid of hot flashes. Good luck

[fifthbird in reply to LadySuR]

This is the first I've heard of Shatavari. I will look into it! I do take another adaptogenic herb, Ashwaghanda, which doesn't do a darn thing for the hot flashes that I can tell.

Thank you!

[kaypeeoh]

In a similar vein, what about male andropause? I'm 64 and rarely have 'morning wood' anymore. It bothered me enough that I mentioned male hormones to the neuro. His response was to shrug his shoulders and mention several males on his staff have the same problem. I guess suggesting it's a natural consequence of age.

[shakymum]

hi Fifthbird,

i was diagnosed at 33, went through menopause at 42 and i am now 51. early menopause was in my family but no breast cancer. I had really bad hot flashes, depression, terrible sleep. about 5 years ago, my ND put me on bioidentical hormones (Estradiol, progesterone and DHEA) , Magnesium Citramal and Vitamin B1 and B6. No more hot flashes, depression improved and sleeping through the night now.

[fifthbird in reply to shakymum]

Thanks for sharing your experience, shakymum. Sounds like it was a long stretch of dealing with menopausal discomfort until you found relief, and I'm glad you did! I have to admit, I somewhat minimized women's difficulties at menopause -- how bad could it be? -- until I started going through it myself. Mea culpa. In terms of hormone supplementation, I'm able to to tolerate a bit of DHEA, which I do think helps. (I have to be careful with it because of my bipolarity.) But bioidentical hormones, thus far, have dropped me into a pit of depression every time I've tried -- even melatonin does that to me. I'm holding out lots of hope for the acupuncture and I've ordered a supplement called Estroven. Meanwhile, sweating it out.