Rough Week Ending In Er This Am

[jbenz1772]

Hi all,

I'm new at this, being diagnosed last month, but having symptoms for years. I guess I'm going to start keeping a diary/time line to queu me in on when I'm getting a flare up. Tuesday, had a major anxiety attack when I couldn't remember my work locker combination(That I've had for 13yrs). Wednesday woke up with severe migraine/neck pain and my HR was all over the place which continued into yesterday.My Neuro had me ramp the Midodrine up to 10mg 3 times a day. Hr from 45 to 150. Couldn't get it under control. Then diahreah last night to wake up at 4am with sever left lower pelvic pain and dehydrated feeling headach chest pain, and left arm pain. So to the ER we go. They gave me iv pain meds for the headache, checked me for neck issues and an ultrasound of my pelvis. So I won my self a ruptured cyst on my left ovary and a kiwi sized cyst on my right which I have to see my gyne next week about.

I have heard that the POTS gets ramped up with the menstrual cycle. Is that what all you experience? Figuring I can add this on my list of triggers.

Thanks for listening,

Jennifer

[lieze]

Oh I'm so sorry.

It's always good to get checked out.

Yes my symptoms always get worse the week before my period.

I hope you feel better soon.

[pat57]

yes there is less blood volume.

good luck at the gyn

[Lovebug]

Yes, yes, yes....chalk it up!!! Very sorry you are going through all this. It's bad enough when our heart rates are high but when they are all over the place (high AND low) it can be really scary. Good thing you got checked. BTW, I get diarrhea with all my flares as well as severe abdominal/chest pain. I pray you feel better immediately!

[jbenz1772]

Thank you all for such kind words and encouragement. Feel so lucky to have a place to go for help and others that understand.

Jennifer

[sandymbme]

Before my hysterectomy (which is a story unto itself!), my periods were awful, but I never made the connection between menstruation and POTS symptoms until after I stopped having periods. I had an endometrial ablation almost 2 years ago, and was fortunate enough not to have periods anymore after the procedure. Definitely improved things for me. I wish I could say things have stabilized further after my hysterectomy and starting on hormone replacement therapy, but I think at the moment I just have too many balls in the air. But for many, going on birth control with periods every 3 months can improve their symptoms/reduce flare ups.

Sandy

[RockiesGirl]

I am so sorry to hear about things with you!! Hope you are feeling better... I wonder how many females with Dysautonomia also suffer with Ovarian Cysts? I have had several and they seem to exasperate my symptoms. Also, my symptoms & my cyst episodes became worse after my hysterectomy 3.5 years ago. Is it the same for you?

[Lovebug]

I am so sorry to hear about things with you!! Hope you are feeling better... I wonder how many females with Dysautonomia also suffer with Ovarian Cysts? I have had several and they seem to exasperate my symptoms. Also, my symptoms & my cyst episodes became worse after my hysterectomy 3.5 years ago. Is it the same for you?

I've had a cyst that self resolved and surgery for ablation of endometriosis. I have thought of having a hysterectomy but am scared to death that I'd have a huge flair...not to mention I'd hate to lose the function of my ovaries in a few years which typically happens after a hyst.

[sandymbme]

I had endometriosis on my ovaries, as well as family history of ovarian cancer, so they took my ovaries at the same time they took my uterus. I was already hospitalized at that time for GI issues, the hysterectomy was an emergency procedure. So I really can't tell if I had a bad flare from the surgery, because I was already doing so poorly. (Maybe that is the way to go? Schedule procedures for when you are already doing badly?) I had ovarian cysts prior to the surgery, and was just beginning to develop fibroid tumors, so it was kind of inevitable that I would have it eventually, anyway. I can't really tell if things are any better, because I am still in the middle of a very bad flare. I did start hormone replacement therapy, to try to keep things relatively normal from a hormonal standpoint. I was really leery of HRT, but my doc said that especially because I am so young (35) that it would be brutal to deal with the worst of menopause, on top of my POTS and Celiac disease. Sigh!

Sandy

[targs66]

I had a hysterectomy (ovaries also removed) in March 2007 for very heavy periods, severe endometriosis, fibroids and ovarian cysts. I have had chronic fatigue for at least 15 years that has become progressively worse - but I could still work. My most serious problems started after the hysterectomy - I just kept feeling weaker and more unsteady, and then the dizziness hit in August 2009. Was diagnosed with neurally mediated hypotension last fall. I do take HRT (in the form of Premarin) b/c the sudden menopausal symptoms were unbearable: I can deal with hot flashes, but the pounding heart and massive anxiety attacks all night long were absolute ****. I feel like there's a definite connection for me between the sudden hormonal change and my current much-worse condition (I am almost housebound now).

I don't know what conclusions to draw from my experience(!) I don't want to say that no one should opt for a hysterectomy, especially given that some women seem to feel much better after they've had one, but I thought it might be useful information for anyone who's facing possible hysterectomy or ovary removal.

Hope you are feeling better by now!

[RockiesGirl]

I am so sorry to hear about things with you!! Hope you are feeling better... I wonder how many females with Dysautonomia also suffer with Ovarian Cysts? I have had several and they seem to exasperate my symptoms. Also, my symptoms & my cyst episodes became worse after my hysterectomy 3.5 years ago. Is it the same for you?

I've had a cyst that self resolved and surgery for ablation of endometriosis. I have thought of having a hysterectomy but am scared to death that I'd have a huge flair...not to mention I'd hate to lose the function of my ovaries in a few years which typically happens after a hyst.

I still have my ovaries but I find it very interesting that so many women have so many of these issues with Ovarian/uteral/cervical/hormone problems. Talked with my OB Gyn & a OB GYN in the hospital and they had never heard of POTS. (Imagine that??) Yet I have found a lot of people dealing w/ this that female reproductive issues is a major source of the problem?? I happened to suggest that maybe all of these things were inner-twined to both Docs?? I was dismissed before I could even finish my sentence. HOPE THINGS are going well today

[issie]

I had a hysterectomy (ovaries also removed) in March 2007 for very heavy periods, severe endometriosis, fibroids and ovarian cysts. I have had chronic fatigue for at least 15 years that has become progressively worse - but I could still work. My most serious problems started after the hysterectomy - I just kept feeling weaker and more unsteady, and then the dizziness hit in August 2009. Was diagnosed with neurally mediated hypotension last fall. I do take HRT (in the form of Premarin) b/c the sudden menopausal symptoms were unbearable: I can deal with hot flashes, but the pounding heart and massive anxiety attacks all night long were absolute ****. I feel like there's a definite connection for me between the sudden hormonal change and my current much-worse condition (I am almost housebound now).

I don't know what conclusions to draw from my experience(!) I don't want to say that no one should opt for a hysterectomy, especially given that some women seem to feel much better after they've had one, but I thought it might be useful information for anyone who's facing possible hysterectomy or ovary removal.

Hope you are feeling better by now!

I had a horrible time trying to take traditional hormones after my hysterectomy. Not until I got compounded Estriol and not the other two estrogens and no progesterone - did I start to balance out. Also, Red Clover has made a huge difference for balance.

Also, what I thought was hot flashes was flashes related to food allergies that created more POTS symptoms. If I eat something that causes a flash, a Claritin works nicely. If you don't want to do an allergy med, the combination of a B-complex and a Vitamin C will counteract a food allergy in about 20 minutes.

[Lovebug]

I still have my ovaries but I find it very interesting that so many women have so many of these issues with Ovarian/uteral/cervical/hormone problems. Talked with my OB Gyn & a OB GYN in the hospital and they had never heard of POTS. (Imagine that??) Yet I have found a lot of people dealing w/ this that female reproductive issues is a major source of the problem?? I happened to suggest that maybe all of these things were inner-twined to both Docs?? I was dismissed before I could even finish my sentence. HOPE THINGS are going well today

There is absolutely a correlation with Dysautonomia and endometriosis. It's just a shame that more docs aren't aware of Dys. I wish we had more awareness of this disease. Ironically, it was my GYN that referred me to the current cardiologist that is treating me for Dys when the EP cardiologist I saw failed to treat me.