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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Triggers >> My period is a real problem...does anyone know why? What can I do? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1336417816 Message started by PamH on 05/07/12 at 08:10:16

Title: My period is a real problem...does anyone know why? What can I do?
Post by PamH on 05/07/12 at 08:10:16

Okay, I'm not going to be embarassed to talk about this....I was so stable... as stable as you can be with this stupid Masto. Then it is time for my period and all H-E- double hockey sticks breaks loose. WHY? Does anyone know why this happens, is there anything I can do to lesson the reactions? Progestrone, testosterone?? I certainly don't need any more estrogen. I woke up the last 4 days with swollen lips and eyes. I am wiped out.
A strange thing happened on Sat. We moved my daughter (20years) on Sat. It was hot, so I really didn't move anything just sat and helped here and there. On the way home my husband and I stopped at meijer. Right before we left the store I ran to look at the clearance. While standing there I smelled this nasty, nasty smell. I turned around to realize the clearance was right beside the fresh cut plants and flowers. So I hightailed it out of there. With in 5 mins. I was crying uncontrollably. Now I did see a mother with her little tiny baby girl...and yes this was kind of sad cause I just moved my tiny baby in her own apt. an hour and a half away. :'( Maybe it was the period, the mast cells or the plants. ****Here is the weird part. With in 5 mins. of the crying episode my lips started tingling and swelling, then my eyes...OMG I am freak and I don't know how my husband puts up with me! How do I put up with me?? Was the swelling caused by the crying or plants. [size=16][/size]
If anyone has any insight into why I am an emotional, swelling crybaby, please let me know at your earliest convenience.
Thank you
Pam

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by iamnotalone on 05/07/12 at 09:35:22

Pam;
I would say...
D. All of the Above.
Sounds like a Combo effect. As you know, I'm feelin' your pain gf :'( I've realized there are many contributing factors, some of which we tend to overlook/forget about- til we backtrack. BTW, what was in your homemade Cream Soda ? I also have read several posts here about our repro. sytems wreaking havoc along w/masto. (Kinda like a match to flames) :( I hope some1 has some info on maybe a HT that's been helpful for them. :-?
good luck sweetie,
lori :)

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by PamH on 05/07/12 at 10:08:08

Thanks Lori,
I'm about ready to pull my hair out, but then I would look really, really scary! :-/
The cream soda- sugar, water, vanilla and carbinated water. Suprisingly easy to make!
Here is the link!
http://www.instructables.com/id/Homemade-Vanilla-Cream-Soda/

Thanks,
Pam

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by DeborahW, Founder on 05/07/12 at 14:24:25

It is very common to have increased mast cell symptoms during one's period. So many women report this, and I know it is clearly the hormone triggering the symptoms. All of my anaphylactic attacks that put me in the ER were during my period.

I now know that around that time, I need to be extra careful to avoid all triggers. For you, that may mean laying low for a few days at home and doubling your meds as preventative. If food is a trigger, eat very carefully during this time. Keeping stress as low as possible will also help because stress is a known trigger.

I bet these things would help you!

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by Starflower on 05/07/12 at 16:42:24

DeborahW, Founder wrote on 05/07/12 at 14:24:25:

All of my anaphylactic attacks that put me in the ER were during my period.

Ditto.

Sudden tears and/or crankiness is not just PMS... for me it's an early sign of a reaction... regardless of what time of the month it is... even if there's nothing to be weepy or cranky about.

I agree that you had a combination of triggers going on... period, the mental stress of helping your daughter move, the physical stress of walking around in the store (was the car hot?), plus the scent of the plants and whatever other chemicals/cleaners, etc... you may have encountered in the store. Sounds very familiar.

Heather

ps - Crying makes my eyes ridiculously puffy too :'(

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by PamH on 05/08/12 at 03:15:27

Good advice girls, I have to remember every month to be extra careful! I just didn't realize how much the period could affect me. I felt extra freaky...like a pinball machine being set off by everything.
It was a crazy weekend! I guess we all have those on occasion.
Thanks for letting me know I am not alone!
Pam

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by KatFromMD on 05/08/12 at 03:48:51

This is a rather extreme solution, but something to consider if you're not planning on having any more children...
I had terrible menstrual issues every month, including not only heavy bleeding but also days of pain and diarrhea, which left me drained and useless about one week out of every four. As fatigued as I normally was, it made it even worse. I also had low iron stores that no one could explain.

So, to deal with all of this I had a Novasure endometrial ablation. It is far less destructive than a hysterectomy, but the results have been fantastic. I haven't had my period in over two years. I might sometimes get a day when my back aches and I'm drained, and I had one month when I had rather strong menstrual symptoms for a day or so, but in general, along with the blood loss I also got rid of most of the symptoms!

I'm not saying this would work for everyone, and you need to really talk over the procedure with your doctor. The prep meds they gave me were pretty horrible (they might be able to skip these, use less or use different ones) and I did poorly coming out of the anesthesia (again, you might be able to negotiate what they use beforehand). The recovery time was about a day. I am very, very glad I did it, as it has made a huge difference for me.

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by cutty sark on 05/08/12 at 08:39:45

Hi Pam

Join the club :(

As much rest as possible and removing yourself from stressful situations if you can, is my advice.

I don't recommend HRT or such like as that can come at a cost such as breast cancer etc. Plus you can only take this for a certain period of time - at least that's the case here - infact most GPs don't recommend it here anymore.

I know a woman (not masto) who had what Kat had, dealt with the physical symptoms for her but not the emotional.

Each to their own, my choice is to let nature take its course. :)

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by PamH on 05/08/12 at 10:16:57

Kat and cutty,
Thanks for your advice and information. It is crazy you think you get this thing figured out and you hit a speed bump.
Next month I'm going to lay low and see if it improves my symptoms.
Pam :)

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by WendyH on 05/10/12 at 14:14:16

Wow I thought I was the only one who got worse during ovulation and during my period. The anaphylaxis is triggered, periods are really heavy and really bad cramps where up until about 6 years ago I never even got cramps. This is soooo not fair. It's a double wallop. :-/

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by PamH on 05/10/12 at 17:35:38

Wendy,
I agree this is not cool. >:(
Pam

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by DeborahW, Founder on 05/11/12 at 05:36:54

Wendy, I am lucky in that I can take 2 motrin for cramps and they completely vanish. Motrin doesn't bother my mast cells. Don't know if you can take it, but if so...it's great for cramps.

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by iamnotalone on 05/11/12 at 06:33:32

Wendy;
Start with One Motrin...
Deb; that is so weird- Motrin gives me spots ! :-?
This @#$% disease makes no sense. :-/
Good luck ladies !!!
lori

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by WendyH on 05/13/12 at 05:40:39

Actually for the cramps I take 2 naproxen sodium the generic for Aleve. They work for the cramps really well.

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by mommy2seanp on 10/07/12 at 14:15:05

Google Catamenial Anaphylaxis

There is a paper by Dr. Vadas. Don't know what you can do about it but I do know of others in your same situation.

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by kesasur on 11/19/13 at 03:56:22

I know I'm a year late here but since I'm new to the diagnosis I will say that for 15 YEARS I've been telling MDs "I know this is related to my hormones". When I went through 6 months w/o a menstrual cycle in my mid 20s I was the most reactive I've ever been. Of course no one knew what was happening, I was dx'd w/ PCOS, panic attacks, grew a bit of a moustache as my testosterone flew sky-high... oh my.

Now that I've been tracking my symptoms I find that at ovulation and around my period I need to use my inhaler and take more anti-histamine for a few days. I'm on a more easy trigger and foods become more of a problem (the 12 foods I'm eating are even more limited).

I've been given some very good advice of YOU NEED TO LEARN TO REST. So I'm trying to do that.
Some of my reading has proven forth that YES hormones are a stressor/trigger and - wonder of wonders- it's NOT all in my head.

I can't even begin to describe how pregnancy was for me... that I'm still alive is amazing- literally.
:o

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by Starflower on 11/21/13 at 06:48:03

kesasur wrote on 11/19/13 at 03:56:22:

Now that I've been tracking my symptoms I find that at ovulation and around my period I need to use my inhaler and take more anti-histamine for a few days. I'm on a more easy trigger and foods become more of a problem (the 12 foods I'm eating are even more limited).

Sounds familiar ::) When I saw Dr. Castells and Dr. Greenberger in Boston, both of them were like, "Oh yeah... symptoms can fluctuate with hormonal changes."

Heather

Title: Re: My period is a real problem...does anyone know why? What can I do?
Post by mountain girl on 01/09/14 at 12:14:53

I remember reading a journal article that addressed this:

Oral and inhaled sodium cromoglicate in the management of systemic mastocytosis: a case report.
J Med Case Rep. 2010 Jun 26;4:193. doi: 10.1186/1752-1947-4-193.

http://www.ncbi.nlm.nih.gov/pubmed/20579383