New adventures in hormone therapy

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New adventures in hormone therapy

Post  Migrainegirl on Sat Jan 05, 2013 10:11 pm

As many of you know, I have been taking a combination of bio-identical progesterone (200 mg), vitamin D (5000 ug) and magnesium (400 mg) for 3 years now. It brought my migraine frequency down from 80% to 20%. I started getting chronic daily headaches at age 45 following a problem with a bulging disk in my neck, never having had a problem with migraine or headaches prior to that.

After 2 years of trying Chiro, epidural injections, acupuncture and other meds (Lyrica, Topomax), it turned into classic migraine symptoms and I realized it was the head causing the neck pain rather than the other way around. Over the next year I had 2 nuerologists throw up their hands after a whole host of preventative medications either did nothing or caused bizarre side effects or both. (Lamictal, verapamil, zonisamide, bystloic, cymbalta, amitriptyline, avelox,Nadolol).

As a last ditch effort I tried the natural progesterone route and much to my surprise it worked! It was not perfect, but my life was clearly much better, with some months better than others.

So here is the problem. I can no longer get the progesterone I've been ordering on line. They can't get it any more. It is in pill form. I can only find a cream type on line, which is both messier and much harder to get a proper dosage on. I tried tapering off on the progesterone in November and my headache days went way up to 50 %. Clearly I still need to take it.

As a potential solution, I found a naturopath doctor in my area who specializes in female hormones. I went in mid December and had a full set of tests on my hormonal levels done. I figured this was a good idea as I have never had them tested. I was just working off of trial and error. It may be that I could also benefit from some other supplements as well.

So far he put me on a multi vitamin and Nitricum acidum (90c), which I take sublingually each morning. This is apparently indicated for headaches that are vice like (as opposed to other types). I go in this week to get the results of my tests and will see what the hormone tests indicate.

Results so far: week 1 - 4 headaches days, weeks 2/3 - no headaches. I've gone as long as 3 weeks without headaches before, so I'm not getting too excited yet, but so far so good.

Downside: Naturapaths are not covered by insurance. The visits are not expensive (about $60), but the blood tests ran $2000. If this works it will be totally worth it, but the jury is out still.

Will keep you all posted on how this works out.
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Re: New adventures in hormone therapy

Post  WitsEnd on Tue Jan 08, 2013 11:20 am

I admire your determination MG, you really have explored all avenues.

I really hope it pays off for you.
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Re: New adventures in hormone therapy

Post  Migrainegirl on Tue Jan 08, 2013 6:16 pm

Yes I am determined, or perhaps just stubborn. I refuse to accept living with this level of migraine every month. I will keep trying until something works.

So I went back to the doctor today and got my results. I am showing low levels of pregnenolone (a hormone all the others build upon), testosterone, estadiol and estriol (2 of the estrogens), Free T3 (one of the thyroid indicators), cortisol in the morning, and serotonin, GABA, norepinephrine, and epinephrine (all neurohormones). My magnesium is good (as I take a supplement for that), and my progesterone levels are high (also due to the supplements I'm currently taking).

So I have a whole bucket load of supplements to take for each of these things. I will take for the next month and see how I do.
Natural thyroid (1.25 grain), hydrocortisone (10 mg), D3 (5000 ui), magnesium (200 mg), multivitamin, DHEA (10 mg), 5-HTP (100 mg), Kavinace, Cognition supplement, Estriol (2 mg), testosterone (5 mg), progesterone (75 mg)

I'm not too worried about most of them. But he is putting me on a different and lowered dose of progesterone which has me a little worried. Yes, my levels tested high. But when I tried lowing my intake in November, I had a very bad headache month. Was it coincidental? Or a direct result? Who knows? Will getting these other things in balance make it not necessary? Again, who knows? It all seems like a major roll of the dice.
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Re: New adventures in hormone therapy

Post  Angela0611 on Thu Jan 10, 2013 1:05 am

Hi I'm new to the site and not familiar with your story, I have a few questions for you, hope u don't mind. Did you have hysterectomy or did you go thru menopause? I had a complete hysterectomy at 35 and one of my neuro's told me to decrease my hrt in half ( i was taking 2 mg of Estrace)cuz it can cause migraines but i stopped it completely i figured i rather deal with hot flashes than the pain of the migraines!! But now the hot flashes are really bad and the migraines got worse a month after the hysterectomy, so my family practice doc prescribed me the patch so I'll see how that works. I'm praying that works, the headaches or the pain is getting intolerable I even get dizzy when I'm lying down.

I'm also taking Topomax 200 mg daily or what I call Dopomax I have all the side effects that come with it, one of the reasons I was taken off work, I was put on Adderall for concentration n memory loss which helps a bit, I'm also on Nortriptiline 25 mg and I take Amerge as needed for pain.

Most days I want to give up, I've had so many tests, seen so many Doctors, I have even gone to Mexico and nothing. I refuse to see a pain management Doctor.

Angela




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Re: New adventures in hormone therapy

Post  Migrainegirl on Thu Jan 10, 2013 10:57 pm

Hi Angela,

No I have not had a hysterectomy. I am peri menopausal at 51. I never had headaches at all until I was 45. While I did not think it was homormonally related for a long time (as I had headaches all month long, not just near my period), I found taking the natural progesterone made a huge difference. I could not take Topomax as it made me very nauseus, so I just have the regular kind of stupids. Smile

One note on HRT, from what I have read the artificial hormones (made in horse urine) can make migraines much worse. They also tend to contain the wrong kind of estrogen (E1 and E2). So, going with bio identical natural hormones is very important. You may want to look into this.

I actually had good luck with a pain management doctor. At least I got pain meds to help manage the migraines, even if they couldn't find anything to make them stop. But if you are getting good support from your PCP, you may not need that.
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Re: New adventures in hormone therapy

Post  Angela0611 on Sun Jan 13, 2013 1:46 am

Hi MG thanks for your response, I'm gonna research that, I haven't started the patch yet, I'm a little scared, my PCP was hesitant to prescribe them to me but I was desperate and in tears that day.

Another question for you sorry, u mentioned u had your hormone levels tested, was your cortisol level low? I just read if thats low it can cause migraines. I have hashimotos n I just read this site about that and those two coincided so now I'm wondering if that can be my problem. It says low cortisol levels can cause allergic reactions, hypoglycemia, low blood pressure and headaches. Which I have ALL!!! I see my neuro tuesday so I'm gonna bring this up.

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Re: New adventures in hormone therapy

Post  mxgo on Sun Jan 13, 2013 6:22 am

I have always thought that my sleep problems are due to high cortisol levels at about three to four in the morning. I see my PCP tomorrow, I will request a check of my cortisol levels, to see if that is the cause of my sleep problems and unstable high systolic BP. Who knows, there may a connection to my chronic headaches.

Martin


Last edited by mxgo on Sun Jan 13, 2013 7:20 am; edited 1 time in total (Reason for editing : grammar)
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Re: New adventures in hormone therapy

Post  Migrainegirl on Sun Jan 13, 2013 2:59 pm

Yes my cortisol level did test low. I don't know if that is due to hasimotos or something else. I do have some sort of tumor on my thyroid. But they say its not growing and don't seem worried about it. (I also have low blood pressure and hypoglycemia).

I am taking hydrocortisone along with thyroid supplements. So we will see if this helps.

So far so good. No headaches in the past 3 weeks. I just finished up the prescribed Nitricum acidum (90c) which seems to have been working well for my type of headache. I am hoping they dont come back, but only time will tell.

In comparison, in:
2009 I averaged 25 headaches/month
2010 I averaged 11 headaches/month
2011 I averaged 11 headaches/month
2012 I averaged 10 headaches/month
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Re: New adventures in hormone therapy

Post  Angela0611 on Sun Jan 13, 2013 4:52 pm

Really, thats interesting! I'm excited! I hope this is it! Thank you! You are really helping me out. Are u allergic to a lot of meds too? What are u taking for the low cortisol levels exactly? In this article I found it says its says many MD's always miss this or miss diagnose this. I think I'm gonna make an appt with my GP tomorrow as well she tends to listen to me more and spends as much time as I need.

The Nortriptiline is making me have weird thoughts I've been on it for 3 weeks now and I really don't feel any difference.

Thank you for your help

Angela

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Re: New adventures in hormone therapy

Post  Migrainegirl on Sun Jan 13, 2013 11:03 pm

I think the hydrocortisone is for the low cortisol. But it could be some of these other things are effecting it too. It's hard to say. They all seem to be somewhat inter-related.

Yes I had very weird reactions to the meds I took, or no effects at all. I had hyperaccusis and such severe nausea that I couldnt get out of bed for 2-1/2 months from the Lamictal, chronic rhinitis that made me allergic to every thing including my husband from the zonisamide, restless leg that kept me up all night from Cymbalta. I gained 20 lbs on Lyrica and was severely nauseas on Topomax. Amytriptiline gave me nightmares and made me lethargic, and I slept even more with the Nadolol. And none of them helped the headaches at all! I had two nuerologists pretty much try every thing they had and give up on me. Ive also tried Botox, acupuncture, massage (helps some) and chiropractic.

This had been a long journey, but I am determined to keep trying.
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Re: New adventures in hormone therapy

Post  Angela0611 on Sun Jan 20, 2013 10:28 pm

Hi MG

So i saw my neuro n she ordered the labs for the cortisol levels... I got my results via email and its normal. I was so bummed out, i was hoping that was it!! So I'm back to where I started. I think I'm just trying to find a cause for my migraines when their isnt a cause fir migraines, huh?!?! ;(

Angela

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Re: New adventures in hormone therapy

Post  Migrainegirl on Wed Jan 23, 2013 5:20 pm

Angela, I think it is a lot more complex than just cortisol. Have you had your hormone levels and thyroid levels checked also?

Here is an update on my progress. After 3 weeks with ZERO headaches ( a record for me ), I'm back to having 4 headache days this past week. 2 were migraines and 2 were low level headaches. I am definitely bummed!

The main thing that changed was finishing the nitricum acidum. The headaches started again a few days after that. Coincidence? Possibly. But I'm definitely going to check back with the doctor on it. I don't know if its something that can be taken long term or not.
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Re: New adventures in hormone therapy

Post  Angela0611 on Thu Jan 24, 2013 3:19 am

I only had Cortisol and thyroid levels checked! My TPO was off the wall it was 9000 but its always been in the thousands for years. I have not had my hormones checked and I'm sure those are abnormal since i have no uterus or ovaries!

Im just getting tired her ive had a migraine now for 5 days, nausea, blurred vision and my stomach hurts like heck too! Ive been on 200 mg of topamax n nortritilyine for a while now, y isnt it preventing some of them?! I have not SLEPT more than 2 hours each nite, i know thats probably part of my migraine!! I think I'll never find a cause for my migraines I just need to deal with them..!! Uugggghhhhhh so frusterating when u are in pain!!!

A

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Re: New adventures in hormone therapy

Post  mxgo on Thu Jan 24, 2013 8:12 am

I had my both the Cortisol AM and Vit D. tested. The Cortisol AM well within range. And the Vit D levels was 45, near optimal level; I take 4000 units daily.

Maybe I will trying going to a Naturopath, for some additional testing. I do know that Pharma Gaba supplements and Zaneflex do help me with sleep and the chronic headache. I will also ask the Naturopath to try neural therapy on the by-pass surgery, to loosen the chest muscles, scars. I tried neural therapy about a month ago, with an Osteopath, and had some success on my chronic headache.

the search goes on!

Martin
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Re: New adventures in hormone therapy

Post  Migrainegirl on Thu Feb 07, 2013 5:48 pm

Update:

So after 1 month on the long list of hormones and supplements, I had 9 headaches (about the same as my average of 10/month). I saw my naturalpath doctor yesterday and he said it can take 3 months to start feeling better. So he upped my dosage on two of the things I'm taking and retested my thyroid.

He also put me back on the nitricum acidum for another month. Apparently you can only take it for 2-3 months max. It acts as some kind if booster for the body. Hopefully it will help.

I'm going to keep at this for the 3 months at least. The good news so far is no weird side effects!
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Re: New adventures in hormone therapy

Post  WitsEnd on Fri Feb 08, 2013 3:00 pm

I'm keeping my fingers crossed that you see some results!!
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Re: New adventures in hormone therapy

Post  Migrainegirl on Sun Apr 21, 2013 8:19 pm

Here is an update on my progress with the naturalpathic approach.

(Compared to an average of 10 headaches per month prior to starting )

Month 1: 9 headaches.
Month 2: 7 headaches
Month 3: 8 headaches (increased progesterone and 5-HTP)
Month 4: 0 headaches.

We readjusted the dosage on a couple of things based on a second round of blood tests.
The good news is I'm feeling great! Lots of energy. I can exercise again. Even a tough schedule of traveling and messed up time zones has not been triggering headaches. So I'm very optimistic at this point. I need to stick with it longer I think to really be able to say for sure, but so far I think this program is working.
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Re: New adventures in hormone therapy

Post  Migrainegirl on Wed Nov 27, 2013 6:39 pm

I thought I would give you all an update on this experiment. The hormone therapy worked very well for about 3 months with zero headaches. Then they crept up again till I was back to my normal rate of 6-8 per month (although only 1 really bad one that kept me home from work).. I was feeling a bit discouraged about this. I went back to my doctor. He did another blood test and adjusted dosages on two of the supplements and within a week I was back to headache free. Zero headaches the past month. I am pretty much able to do everything again and live a normal life.

This has all been during a time period when I've taken a much more demanding job. Lots of travel which is always a trigger for me. I could not have even contemplated it had we not been able to get my migraines under control. So I feel very fortunate.

For anyone who has gotten migraines associated with peri-menopause or with their periods, I would certainly recommend looking into it. The key is you need someone to check all your hormone and nuero-hormone levels via blood tests to figure out what you need to get them to optimal. Just randomly taking things won't really work unless you just luck out.
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Re: New adventures in hormone therapy

Post  Jen E on Wed Nov 27, 2013 8:35 pm

Interesting journey. It's quite a struggle, isn't it? I just started with a Holistic Internist this week. Having all my bloodwork done and checking all the hormones, possible vitamin deficiencies, thyroid, adrenal, etc. I am being sent to acupuncture (which I had success with in the past for an ankle injury). I have a magnesium powder supplement to start. Once I see how things go, I'll post something. Your posts here were very enlightening. Hope you continue to do well. Smile

Jen

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