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CFS, PMS and Perimenopause

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I am due for my period on Sunday. Last night I started with extreme nausea and now I have a migraine. Ever since I went into perimeno my life has been turned upside down. This is how it goes, migraine before period and nausea. Plus, I feel like I am crawling out of my skin. Nobody talks much about this on here, but it is my biggest problem. Hormones have always been my issue.

This week has been awful. I took either biofilm or a new 50 billion probiotic and had an allergic reaction like no other. No matter what I took, Benadryl, Zyrtec, etc. it didn't touch the itching and now chronic insomnia. I am sick as a dog.

I am so sick of being sick. I could say something like, "it's just not fair", but what for. The week before last I had a bladder infection, in June I hurt my back and ever since then I have been 10X worse. It just keeps switching all around for me. My life is constantly in unstable mode. My symptoms are all over the place. It's awful. I am constantly dealing with an emergency.

How does anyone deal with ever changing symptoms, every week it changes and just feeling EFFING nuts? If it's not one thing, it's something else.

Also, in the past year, my hair went from being poker straight to curly?? I was told this is hormones. It's so bizarre. All of my life I have straight hair and now I have ringlets.

Also, I started seeing a therapist who I like. I might be meeting a guy from an online site. We only talked once and it went super well. Anyway, she told me, "Don't tell him anything until a couple of months in about the extent of your illness. Guys don't need to know too much info and it could scare him off. You want to make sure you like him and he likes you." My problem with that is, I am too sick to hide it. I am anxious because I don't know if I can pull that off. :(

I am a mess.

Please don't suggest hormone supplements for me. They made me much much worse and bioidenticals too. I was so sick, I cried all of the time, etc. I don't do well on hormones. Also, I can't afford anymore alternative treatments. Acupuncture is too expensive. I spend at least $1,000 a month on out of pocket expenses. It's nuts.
 

Mij

Messages
2,353
Yes I'm going through the same as you. I load up on magnesium + P5P and keep a lot of fresh ginger root to chew on for the migraine and nausea. There isn't much else I can take otherwise it throws me into a loop.

This is great that you can take a step out and date, I can't even entertain the thought. I agree with your therapist, you could tell him that you have a weaken immune system and that you have good days and bad days and need to rest on the bad days. It's simple enough to understand and you dont' have to get into details.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Have you heard of Community Acupuncture, not sure if it is as effective, but I believe it is supposed to be! And much cheaper!!

GG
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Copper...

Hi Spitfire,

I posted this on another of your threads, maybe a month ago...perhaps you missed it...but I would strongly suggest looking into 'copper overload' or so-called 'hidden' copper toxicity. Of course many of our symptoms can be caused by different things, but a lot of the things you bring up, both physical and emotional symptoms seem to just scream "high copper".

A google search will turn up lots of info, but here's just one link for now:

http://blog.garymoller.com/2011/07/have-suffered-severe-anxiety-panic.html

(note that only some of the main symptoms are mentioned on that blog, but it's a start)

Best regards,

Dan
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I will have to look into high copper, but at this point any detox or EDTA or whatever is needed can't happen. I am too sick.

Mon ame, I am not even sure I can date. Why bother when I am so sick. I had 4.5 hours of sleep last night, woke up in a panic and my migraine is kicking up again. I can't even tell you the last time I had more than 5 hours of sleep.

No one ever tells you that this is what perimeno is like. I have been eating and drinking ginger. I made soup yesterday, and it is loaded with ginger.

Acupuncture does nothing for me.
 

jenbooks

Guest
Messages
1,270
Lemon Juice

At some point in the next six months or so I hope to do a little more reading on RBTI therapy. Google it and look at some yahoo groups. There is a practitioner in northern VA not so far from you--Challen I think his name is.

I got interested because I was getting horrible throwup migraines more and more often. They had been and off and on feature of lyme disease. I was getting them about every week to 10 days for a while there. And it wasn't just a killer headache. My liver/gb would feel congested, my sinuses would drain, I'd get very depressed, feel like "death warmed over", my joints would get extremely crackly, and basically I'd feel totally sick and miserable. Eventually I would throw up, but often after a miserable night, and I'd literally throw up food I'd eaten 8 or 10 hours before. It just sat in my stomach as my body decided not to digest a thing if I had such a bad headache.

Well at some point I was using lemon juice (fresh) in water as a rinse for my clothes because of MCS, not wanting to use anything chemical, and disliking vinegar. And so I started keeping a jar of fresh squeezed lemon juice supposedly for clothing. But then I began to sip it as it tasted good. And I found that when I had the beginning rumblings of this liver/gb headache turning to migraine, I could drink some lemon juice every 20 minutes or so, and it would not turn into a migraine, it would even go away.

I began to drink it regularly. Now I consider it medicine. I think there's a good biological reason for it and RBTI therapy uses lemon water as a mainstay of therapy along with analyzing mineral deficiencies in some kind of unique way I haven't studied at all. And I would think mineral deficiencies are at the root of my illness. First, I had undiagnosed celiac from age 9 on with obvious manifestations the stupid doctors missed and those symptoms and ailments didn't clear up until I went off all gluten decades later. So I was already mineral deficient my whole life long. Then I got mercury poisoning from a ton of amalgams as a teen, so that displaced my selenium and ruined my glutathione status etc. So mineral transport is really important.

So you could try the lemon juice. It might or might not work for you. It seems to detox the liver/gb in a very simple way--and that is what gets congested especially pre-period.

I understand about the changing symptoms. A hallmark of lyme anyway it is like having a shapeshifting demon attacking you, but I think there's probably a logic to it. The inflammatory system and all those molecules are on overdrive, and can be tilted into actual inflammation in any organ or system with a little nudge. Why it changes probably depends on the specific trigger(s).:D
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
What to do?

Hi again,

Like any other topic, there's a lot of conflicting advice when it comes to copper toxicity or overload, but for the most part the main thing to do is to decrease the amount of copper-rich foods, and also other exposures to copper -- and increase foods high in zinc and sulfur, slowly but surely. I've been emailing with a gentleman in the UK about this and he believes a big part of my ME/CFS could be due to high copper (I was prescribed copper supps several times by different doctors, and also zinc/copper supps) and for the last 5+ years have inadvertently been eating a pretty low-zinc and high copper diet. And who knows what was in the water I was drinking...

Also it's apparently important to make sure you have good bile flow -- that your gallbladder is doing it's job -- as that's the main way that copper (and other heavy metalsare excreted from the liver) -- in the bile. If one has eaten a very low fat diet for years, that can lead to so-called 'fat intolerance' (which I have), kind of a vicious cycle. But certain herbs and/or digestive enzymes/ox bile extract -- and the LEMON JUICE that Jenbooks mentions -- can help stimulate bile flow and improve gallbladder function.

High copper can cause low zinc (and low zinc is NOT good when you have ME/CFS, adrenal exhaustion, etc). An easy, cheap, but reliable test to see if you're zinc deficient is to get a liquid zinc supp called "Zinc Tally". You take a spoonful and if you have enough zinc then you'll experience a strong metallic taste -- if you're deficient, then nothing. When I did it, it tasted like water. A month later, I'm getting a little bit of a metallic taste. My sister tried it, got a strong reaction.

Here's a video on youtube that gives a general list of symptoms -- he doesn't mention severe CFS -- but just about everything else, especially RACING MIND, ADRENAL EXHAUSTION, SEVERE PMS Symptoms or "pms-like" symptoms, etc:

http://www.youtube.com/watch?v=tomlsxtuadg

Another description:

http://www.alive.com/465a2a2.php?subject_bread_cramb=8

The thing to remember if that it takes time to resolve this, and that proceeding too quickly can make symptoms worse. My anxious, aggitated, 'racing mind' has finally quieted down (thought for sure I was just NOT going to make it, was extremely "wired but tired" for the last 9 months), but I'm still very, very sick in other ways. On bad days I remind myself of this initial improvement...helps keep me going.

Best of luck,

Dan
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
High copper can cause low zinc (and low zinc is NOT good when you have ME/CFS, adrenal exhaustion, etc). An easy, cheap, but reliable test to see if you're zinc deficient is to get a liquid zinc supp called "Zinc Tally". You take a spoonful and if you have enough zinc then you'll experience a strong metallic taste -- if you're deficient, then nothing. When I did it, it tasted like water. A month later, I'm getting a little bit of a metallic taste. My sister tried it, got a strong reaction.

The thing to remember if that it takes time to resolve this, and that proceeding too quickly can make symptoms worse. My anxious, aggitated, 'racing mind' has finally quieted down (thought for sure I was just NOT going to make it, was extremely "wired but tired" for the last 9 months), but I'm still very, very sick in other ways. On bad days I remind myself of this initial improvement...helps keep me going.

Best of luck,

Dan

Hey Dan--

Yes, I also had/maybe still have HIGH COPPER and VERY LOW ZINC, showing up in my hair mineral analysis every time I've done them during the past 5 years. A year ago, I added a 25 mg zinc supp, and it was much too high a dose. I felt severe anxiety after a few days on it. Now I take mini-doses of zinc, and make sure to not take copper supp's, and minimized copper in my diet. I am going to retest it in a few months and see if it has made a difference.

I'm glad you feel a little better.
 
Messages
22
Spitfire,

Well, I don't know if I have any suggestions for you, but I just wanted to let you know that I have been feeling the same way. My gyn did not say if I was perimeno, but my mom thinks I probably am at my age (38.)

I have all of the same symptoms you describe, along with the straight-to-curly hair thing. I think my hair changing has been one of the strangest things that has happened to me over the past few years. My husband and I will look at my ringlets and just wonder what has happened :eek:

I too tried to get on hormone replacements, the bio-identical, natural kinds, but nothing seems to help. My migraines, when then come, are worse than ever! :headache:

I have not been tested for the other things mentioned in this thread (copper/zinc/etc.) but I have had LOTS of amalgam removals done over the past ten years or so. I have long suspected that they might be a problem. Unfortunately though, I don't think enough precautions were taken when they were removed. :(

So, since I have nothing really to add here... let me just end by giving you this :hug: and here's to hoping that we find out what is REALLY going on here... more sooner than later!!

Grampus
 

Mij

Messages
2,353
Spitfire, I experience many of the symptoms you describe including insomnia, the insomnia comes and goes so occassionally I get good sleep. I also experience adrenaline surges into the night where my heart beats really fast and I feel like I'm on the edge, scary, very low dose trazodone helps take the edge off.

btw, I had my copper and ceruloplamin tested and my levels were found to be belownormal. I also have problems with low ferritin.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Everyone, thank you for your advice. So, 2 days of a major migraine and then yesterday I got my period. Can I tell you that the night before I had the best sleep! OMG. Why can't I sleep like this always? Right before my period, I sleep great! The migraine subsided. I took imitrex and that helped too.

I went and bought zinc but am scared to take it for the fear that dreambirdie said and I love lemon juice and do drink it but it does nothing for my migraine. Thanks, Jen.

My doc sent me a form to go to Quest for Copper and zinc levels, which I will do. He also wants a hair test done. I started taking more magnesium.

What a mess. It's not until perimenopause that this has happened. Before that, I never had a migraine in my life.

And thank you Grampus for the ringlet story! Me too. I feel like the little Vampire (Kirsten Dunst) from the Anne Rice movie. They (Tom Cruise) made her into a vampire and her hair became curly. I feel like maybe a vampire bit me. What is that movie called with Brad Pitt? Can't think. Another classic symptom that becomes beyond bad at the time of my period.

BRAIN FOG!!
 
Messages
22
And thank you Grampus for the ringlet story! Me too. I feel like the little Vampire (Kirsten Dunst) from the Anne Rice movie. They (Tom Cruise) made her into a vampire and her hair became curly. I feel like maybe a vampire bit me. What is that movie called with Brad Pitt? Can't think. Another classic symptom that becomes beyond bad at the time of my period.

BRAIN FOG!!

LOL it's Interview With the Vampire!!
 

lizw118

Senior Member
Messages
315
I just want to say I feel your pain. I too am affected a lot by hormone shifts and I feel like my health and symptoms are never stable due to hormonal issues. Perhaps we are overly sensitive to hormonal shifts? I never know how I will feel from one day to the next. I have also recently gotten curly hair! WTF??????? I think it happened to my mom at a certain age. What hormones affect this phenomenon?
My thyroid and adrenals are involved also. I do well on certain types of estrogen (estriol) and very poorly on any type of progesterone. I am not sure what to tell you, only that I wish you the best and I hope we both find answers
Liz
 
Messages
64
Location
Western Australia
Hi Spitfire,

sounds like you have really been put through the wringer lately, you poor thing!

I too have migraines with my monthly cycle, however, I get mine the week of my period. Just came out of a week of being migrainey, seems to be lasting longer and has definitely got worse in the last few years. I am 39.
Two types of medication which have really helped me with the pain are Naramig (Naratriptan) and Maxalt (Rizatriptan). The Maxalt come as wafers you can disolve in your mouth. That's great for when digesting stuff is difficult (like when you have a lot of nausea). I have also found that cold packs on my head help a little.

I recently had my hormones tested (yet again) and apparently my testosterone was effectively zero. Just another weird result :rolleyes: . It's funny, I recently had my local doctor try and give me the 'All your tests are normal' speech. No, actually they're not, she just never does the right ones!! Thankfully I have another doctor, more experienced with CFS/ME. She obviously does the right tests, as they are the ones which come up abnormal. I'll be getting the rest of my results tommorrow, so I will have to wait until then.

I hope you start feeling a bit better soon.

take care, ness
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Yes, the whole thing is crazy and after I get my period, I don't sleep much either. It's truly a bitchin time!! Guys are so lucky. It turns me upside down so much so, that I know not to plan anything around that time of month. It is what it is.

Imitrex is what helps me. I am happy for that. But the achiness, insomnia and wanting to bite someone's head off....well, still not sure what to do with that. ADRENALINE SURGE.
 

Cindi

Senior Member
Messages
229
My CFS got worse during perimenopause.I would suggest you to make some reading on natural progesterone support.It might be of some help. Best wishes.
 

aprilk1869

Senior Member
Messages
294
Location
Scotland, UK
In addition to sorting out the copper/zinc ration, potassium might be a good thing to consider. There also seems to be a connection between potassium and progesterone but at the moment I'm not sure what.

When I was 23 I developed a severe case of PMS immediately after taking a course of steroids. After four years of debilitating symptoms and seeing numerous doctors I decided to research the drug that started my problems. I read that, among other things, steroids deplete potassium. Having just seen a doctor and knowing I had no medical condition that should prevent me from taking potassium, I began taking 600-900mg K/day, everyday. Over the next three months my symptoms gradually decreased in intensity and duration until I was completely free of PMS. In addition, my overall health and energy level significantly improved. Shortly thereafter I developed a bladder infection and was given a 10 day course of sulfonamide antibiotics

(i.e. Septra, Bactrim). My PMS returned and again I was off to the library to discover why. Sulfonamide antibiotics are chemically similar to carbonic anhydrase inhibitors which are potent potassium wasters. In addition, bicarbonate is lost and chloride is retained so the form of potassium to be taken is an alkaline form, such as citrate, bicarbonate or gluconate. Potassium chloride cannot be used in this instance so I took potassium gluconate. This time I had to use 1.2g K/day to notice improvement in my PMS and within three cycles of taking this amount, I was again free of symptoms. In the next year two of my friends decided to try potassium for their PMS. One took 600mg K/day as the gluconate and the other took 500 mg K/ day as the gluconate. Each noticed a gradual decrease in intensity and duration of symptoms until they, too, were free of PMS. Both stopped taking potassium after a few months and they remained symptom free.
http://orthomolecular.org/library/jom/1998/articles/1998-v13n04-p215.shtml
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Yes, I take progesterone. It helped straighten out my cycle, but it did nothing for migraines or the other one million symptoms.