brethor9

On 1/14/2010 at 8:19 PM, juliegee said:

It is a prescription, called Combi-Patch. With HRT, you're supposed to start with as little as possible. For a long time, 1/2 of a patch, twice weekly, worked great. Then, the hot flashes, adrenalin surges, tachy, etc came back with a vengeance. I upped to 3/4 patch and have done great since. A transdermal transmission (skin patch) greatly lowers the risk of blood clots, etc. and by-passes liver interference. I highly recommend it.

Hi Julie!

I know this is an old post but wondering how you made out *** HRT and the comb patch currently? Are you still doing HRT etc? I went into early menopause over the last year and it has been an absolute train wreck for my Dysautonomia to the point of being bedridden. I am currently on the estradot 50 patch and 100mg pill of Progesterone. I am wondering if I would fare better with a combined patch. Are they transdermal and safe like just the estrogen re clotting and cancer etc? 

Thanks so much and hope you are doing well!

Brenda

On 12/25/2022 at 9:11 AM, redpenny11 said:

So I don’t have answers sadly but am experiencing the same. I am 47 and since earlier this year my heartrates are hovering low forties (holter showed 29 while asleep). (I’ve had POTS for 12 yrs) Cardio says it’s just dysautonomia and a specialist in autonomic dysfunction said he has seen that but not often . I rarely go high anymore although if dehydrated I’m still low level tachy.  I was told a pacemaker would elevate the numbers but I would still feel the same so not recommended. My best guess is hormones are the contributing factors . My thyroid always shows normal but I have every symptom of being hypo. Extreme Fatigue and nausea/dizzy are my worst symptoms . I wish I could find someone who could figure out how to even slightly improve symptoms . I’m sorry you are experiencing the same. I honestly prefer just the tachycardia because it was easier to mitigate . Nothing seems to help this .

redpenny11 did you ever get any answers about the Florinef? Since early menopause I am wondering in the Florinef that I have been in for 12 years is now interacting negatively with my Estrogen HRT. No matter what I do I can't seem to stabalize. I'm now as sick as I was 12 years ago before diagnosis. It would seem Menopause has crashed the system...

Hi All

My HyperPOTS/Dysautonomia has decided to completely go haywire since entering early Menopause in the last year due to ovary removal. The problem is I'm dealing with Bradycardia (Hrs in the 40s) and Tachycardia now. Sick Sinus Syndrome has been ruled out and my specialists say my heart structurally is fine. I honestly believe that my hormone changes are at play somehow but can't figure it out. None of my 5 specialists have answers either. I am currently on just an estrogen patch. My endo refuses to try any other hormones and here in Canada it's next to impossible to find hormone specialists. So I'm looking to my fellow POTsies for any help, recommendations and insight you may have on this topic. I'm bedridden and desperate.

@MomtoGiuliana are you on any HRT? I just started early menopause due to ovary removal and have had such a severe relapse I am.almost bedridden again. I am currently on just an estrogen patch and florinef. I have no idea how meno affects POTs hormone wise. Any insight?

Bren

Oddly enough my body behaved itself more with Omicron and I can't for the live of me figure out why. On the other hand I just got ove a bad respiratory virus and it kicked my a**. Menopause has crashed me harder than any virus put together however.

Picklesquish any updates on your battle with POTS and Menopause? I have become completely disabled by it despite trying several doses of estrogen. My specialist will not give me progesterone or testosterone as she feels it isn't required. I disagree but here in Canada hormone specialists are almost impossible to find

Pattie curious to know what was the lowest dose HRT you were on and how are you faring now?

Thanks Rama!

Good to hear from you btw. I would love to call it total remission more of a learning to live with it decade. 😉

redpenny11 did you ever get any answers about the Florinef? Since early menopause I am wondering in the Florinef that I have been in for 12 years is now interacting negatively with my Estrogen HRT. No matter what I do I can't seem to stabalize. I'm now as sick as I was 12 years ago before diagnosis. It would seem Menopause has crashed the system...

Hi Pistol:)

I don't have a Gynecologist unfortunately. Due to hysterectomy and ovarian cancer I haven't really had the need to see one. I do have an endocrinologist but she deals mostly with my thyroid issues and not hormonal.

Nin 

My HRT is estrogen only and patch. 

Hi All

I have been on Florinef for almost 12 years Recently hit surgical menopause and find that my POTS/Dysautonomia is all over the place. In just 7 months I have gained about 30 pounds. I haven't been this big since carrying an 8 pound baby! I'm thinking the HRT and Florinef are not playing well together as both make you retain fluids and sodium. I had zero weight issues prior to Meno and HRT. I'm thinking at this point of stopping my Florinef but have no idea how to taper. Since the Pandemic my specialists have basically been MIA so no help there. Have any of you weaned off Florinef? Gone through Meno with the same issues? Any of your specialists mention Estrogen and Florinef issues? Help please!!

Hi All

Haven't been on for many years now and like many of you had just gotten used to and into a rhythm of living with my hyperadrenergic POTS and Dysautonomia symptoms. To say life has been awesome would be an understatement as many of us know but I was functioning. Cue early menopause and now I have crashed so hard I can barely move some days. Wondering if there are any other members on here who have hit meno and crashed? Are you on HRT? Low dose? High dose? Does anyone have an idea of what Estrogen has on blood volume etc? My understanding is it's a vasodilator so in turn would it not make POTS symptoms worse? especially if you have low blood volume and problems with vascular constriction? I would appreciate any kind of insight any may have.

Bren

Thanks ladies! Katie I am so happy to hear from you also ? not glad that you are still struggling though.. hang in there girl! I would love those reference articles when you are feeling up to it.. have you come across anything mentioning pelvic surgeries etc affecting POTS. . I am so sure there is a correlation somehow and I need ammo for my docs ha ha

Bren

Hi Trish ?

Thanks for replying! I also have EDS and mast cell illness. I have noticed everytime I had pelvic surgery that my symptoms would get worse but I eventually would pop back. I only have 1 remaining ovary that has another cyst on it and I do wonder if it is causing some hormonal upheaval. I also have endo... none of the docs think its related but I really wonder since it all hit at the same time... its so frustrating 

Bren

Hi All ? 

I have suffered with Pots since 2008 and diagnosed and medicated in 2011 with Florinef. Just in the last month I have had a severe relapse which has bedridden me. I have been racking my brain trying to figure out what may be causing it. Most of my symptoms are similar to POTS but I have new ones like extreme muscle weakness, drowsiness like being tranqued, vertigo episodes etc.. I also have what I think may be pelvic congestion. I have tried upping my med doses and its not helping like it usually does. Has anyone had Florinef especially go from being positive to negatively affecting their POTS? 

Hi all ?

Haven't been on the forum in a long while dealing with other health issues. Long story short over the last several years I have had to have some pelvic surgeries. Have had almost everything removed except 1 ovary that keeps getting masses. My question is to other ladies who have had pelvic issues do you notice if it makes your POTS symptoms worse? Up until 3 weeks ago I was mostly functional and suddenly went into full relapse. . Docs cannot figure out why except I have another pelvic mass and swelling...they say they dont think it is hormonally related but I wonder?  Would appreciate any thoughts ?

Bren

Sorry I am adding to this thread late.. I have been off the forum for awhile.. I also have MCAS. . for me my specialists believe it was triggered by my Ehlers Danlos.. connective tissue disorder.. many of us POTSies have all 3 disorders as they travel together ?

Hi all

Just wanted to post this for any Canadian patients with Dysautonmia/POTS, Ehlers Danlos or Mast Cell Illness. I was at my autonomic specialist's for a recent follow-up and he advised me they are having an upcoming conference which will be delving into all of the above issues. They have quite a few speakers from different areas attending. It looks absolutely fabulous and it is definately about time Canada had something like this open to the actual patients. My specialist said they have made alot of headway into causes and effect of these illnesses and hopefully over the next several years we will see some advancement. If you want more information go to the ILC website at theilcfoundation.org

Bren

Thanks everyone for the well wishes! that is what I pretty much figured considering my initial onset of POTS etc was after a hysterectomy in 2008. I just wasn't sure if it was POTS acting up or the hyperthyroid....seems like no matter what meds I take the symptoms don't want to settle..... I feel some relief in knowing it is probably normal for us and will settle itself down again.

Katybug sorry to hear you had to have neck surgery I hope you are on the upswing and managing ok

I appreciate the advice and support from you all ....hugs

Bren

Hi All

Haven't been on the forum in awhile due to life being a little chaotic and trying to get my Graves Disease under control. I also just recently had to have abdominal surgery due to an Ovarian Cancer scare (thankfully I am ok but unfortunately my POTS has gotten completely out of control again I am still taking all of my regular medications, trying to get salt and stay hydrated but cannot seem to get on top of the symptoms..... has anyone else had surgery and had an increase in symptoms? did anything help? did your POTS eventually settle down again? I am hoping it is just because my system was so upset and pooling and swelling issues but who knows? This illness is so frustrating!!

Thanks

Bren

Thanks all for the well wishes so far treatment for the Graves has been a bit of a roller coaster and I have been feeling quite poorly but I am keeping positive Endo says it can take up to 18 months to stabilize and go into remission so here's hoping

Bren

yes I totally agree!! I have been suffering with severe symptoms since last December that got so bad I literally could not use my leg muscles from weakness. Most of my specialists kept saying oh its from POTS and the mast cell illness but no matter the treatment I just kept getting worse. Finally one of my doctors decided to run a thyroid panel and lo and behold I was diagnosed with hyperthyroid.... my numbers were so high I was days away from a thyroid storm which could have killed me! I just found out last week that I have full blown Graves Disease so yes pay close attention to your symptoms and if they are not normal for your normal push to have tests...you know your body!!!

Bren

yes I get this especially the lower extremities... they get really red, itchy and my legs ache like crazy....other times they get mottled and purple....my hands and arms are starting to do the same....I have so many other co-morbid illnesses ie MCAS/POTS/EDS and now Graves I can't tell which is responsible for it

Bren

So just to add to my growing list of diagnoses...2 weeks ago Graves Disease....I went to follow-up today with my specialist and found out I now have mild stenosis in one of my heart valves! ugggh just last May my echocardiogram was completely clear so not really sure how this could come up so quick.... any one else been diagnosed with stenosis?

Bren