Interesting Article in VEDA today - SOME NEW HOPE!

http://vestibular.org/news/09-27-2012/searching-stillness-bioidentical-hormones

I found this article quite hopeful. I have been pursuing bioidentical hormones (I’m just starting) and will let you know of any progress. My blood work has shown severe problems with my hormone levels. I hope so very much this might be the answer.

-Lisa

Hi Lisa,

Interesting story. Bioidenticals is the base treatment behind “The Migraine Cure” that Molly and I tried 3 years ago (and I spent $2500 on) with no effect.

Please be careful in that you don’t spend a pile of money on this at the outset like I did.

Good luck,
Scott

I am not doing anything of that nature. A brilliant reproductive endocrinologist is my doctor. will let you know of anything positive.

Great story! I see the woman got better from her MDDS but does it also work with MAV?
Keep us posted and good luck.

That’s great Lisa. I believe that hormones play a huge role in all of this, especially for women. This is pretty minor but I starting noticing a big difference once I starting taking natural progesterone cream. It really has helped with my symptoms as well as Effexor. I recently ran out of it and keep forgetting to go get a new one and had a pretty bad menstrual cycle plus feeling like crap. So your post reminded me of getting my butt up and going to hi health. Before I even knew I had Mav, my sister who does body talk which is working with energy kept telling me that my body needs progesterone. Finally after a long time, I started using it and a lot of my symptoms improved.

I am really glad you are working with a great dr and I am hoping that you are going to have some great success. Please keep us posted.

Mary

All the luck in the world with this Lisa. Will watch this space with great interest and hope for you.

Brenda

Hi Lisa

That is interesting. Is this treatment very costly?

Did you have to request a specific blood test to identify problems with hormones or would a normal one show this? I have had my thyroid checked and it was ok but I am not certain what else they would have checked for x

Rockergrl - I am beginning to see that the name doesn’t matter. it seems with chronic symptoms some docs with say MAV and other MdDS.

Jem - hasn’t been costly. I was told that the following must be tested:
Estradiol
Progesterone
LH
FSH
Fasting Glucose
Fasting Insulin
Fasting cortisol
Prolactin
DHEA
Free testosterone
Total testosterone
TSH
Total thyroxine
free Thyroxine
Total T3

I’ll let you know if anything positive happens

Molly and I had the same blood tests done for all of those markers. This was the email we both received back then afterwards:

— Begin quote from ____

I enjoyed speaking with you by phone. Based on our conversation, I’m happy to tell you that people with similar challenges have reported tremendous results with our program.

Our science, pioneered by Sergey Dzugan, MD, PhD, involves re-balancing body chemistry via bioidentical hormones, vitamins, and supplements. It’s a method that is working wonders for our clients every day, and you could be next.

You undoubtedly have some questions, and our Client Coordinators are available to answer them. Just call (877) 402-2721 for a no cost, no-obligation chat.

A true solution for your migraines could be at hand. I urge you to reach out for it today.

The name of the book is “The Migraine Cure” by Dr Dzugan.

Sincerely,

Migraine Program
migraineprogram.com

— End quote

Scott,

I urge you to keep such comments to yourself. I am doing Nothing like the program you tried. Nothing, like it. I read about it. Definitely a money-making scheme. I am pursuing nothing like that! I am not having a debate. I am extremely ill and even so wanted to share with others. That’s all!

Lisa,

I understand that you are very ill and Scott’s reply may have upset you, especially since you aren’t feeling well. But I disagree with your suggestion that he should not comment. In fact, I think he has an obligation to do so, especially on this thread.

I replied once before on this subject because I, too, was concerned that this board could be seen as giving tacit approval to bioidentical hormones as helpful for MAV, when in general, the tone on this board is one that encourages evidence-based treatment and advises caution when investing time, energy, hope, and especially money in other kinds of treatment. Scientifically based treatments are the ones we generally support here; others are questioned, not just to save people money, but to keep them from getting their hopes up about treatments that have no scientific basis and could, in some cases, even cause harm.

I wish you the best of luck, and of course you will pursue whatever course you choose. But I think if you post on this board, scientific information needs to get equal time because that’s the “slant” that’s taken here.

[size=130]The Mayo Clinic says this about bioidentical hormones:[/size]

Are bioidentical hormones safer and more effective than hormones used in traditional hormone therapy for menopause symptoms?
Answer
from Mary M. Gallenberg, M.D.

No, they aren’t. The term “bioidentical” means the hormones in the product are chemically identical to those your body produces. In fact, they are — but so are the hormones used in many FDA-approved hormone replacement products.

According to the Food and Drug Administration (FDA) and several medical specialty groups, bioidentical hormones may be riskier than are hormones used in standard hormone therapy, and there’s no evidence they’re any more effective.

There are soooo many women that have been helped by bioidentical hormone therapy. You can go to just about any peri/meno site on the web and read their posts. Dizziness is a known symptom of peri/meno as are migraines. Some women are helped with birth control pills as well. I just started BHRT so too early to tell yet but I got this right when meno hit so my docs even said it’s hormonal. I did the diet and tried all the poison pills and nothing helped so it’s nice that most doctors agree that hormonal changes are a factor and I will get sorted soon. :wink:

Thanks for sharing, Lisa!

Scott, sorry you had a bad experience. Thanks for informing us so we know what to avoid (scams) if we pursue this, and to be sure to find a reputable doctor like Lisa has.

And thank you Lisa for letting us know about this. I’ve been reading a lot of information the past couple of days and success stories. While I know it won’t work for everyone, I know it has worked for many, and it’s definitely worth a try. My worst attacks and sick times and directly linked to hormones and my monthly cycle and I think maybe in that case or definitely in the case where someone has some hormone level that isn’t right, this could change their life.

Lisa, no one is telling you not to pursue this if you are really set on giving it a go and I realise that you are seeing someone not associated with the Migraine Cure. I am simply pointing out for others here that it is the exact same premise as the Migraine Cure where bioidenticals are used following blood tests and for which I am unaware of any real evidence as a migraine treatment. Molly and I were dealing with a real doctor. He had Molly come off her antidepressant at the time while the bios were being titrated up. For Molly the result was absolutely catastrophic for many months. For me, I had severe headaches every time I tried to introduce any bioidentical. People need to know this. I will never keep such comments to myself.

I am also grateful for the information that Maryalice posted from the Mayo clinic. I was unaware of that warning and we all should be aware. There’s certainly nothing wrong with that and I would encourage people to not hold back if there’s info like that we should know about. That’s the whole purpose of this forum.

Scott

Lisa-- that makes sense about not caring whether it is mav or mdds. My doc calls my rocking Mdds but I had no motion experience so I have no idea what to believe. I spoke to my gynecologist today and she said that she does not use bio-identical hormones. Of course she is not really aware of MAV and only heard of Mdds with people after crusises. I too have such wide fluctations in my symptoms with my cycle. I am wondering if this is for me. How did you know this was something to pursue? I never heard of this to be honest. I wish you success. Are the treatments working at all yet? I hope so!!!

Scott- thanks for keeping us all informed with scientific basis. It just seems there is no real evidence for any of these treatments or is there? Did you and Molly have abnormalities on your blood tests and that is why you took hormones? Also, how do we know what our normal level of hormones are? I’ve had so many blood tests but I don’t know if my hormone levels were tested or not. I will ask my neurologist if he ever treated MAV with hormones before and if he had any success at my next appointment.

Sharon,

Calling the medicines people use here to effectively treat their migraine and get on with their lives “poison pills” is not helpful and is – frankly – an ignorant point of view. I’m sorry if you’ve had a bad experience; however, we look to what the evidence and expert opinion tells us on this forum and the evidence is clear for a great many treatments used successfully by the large majority (including myself).

Conversely, I have never heard of anyone with an intractable case of MAV using some sort of hormone replacement therapy and seeing an end to this. It’s a curious question as to the lack of efficacy but where are the success stories? We apparently have one from VEDA here; however, we have no idea what the “other medications” are the person was on which the article states remained unchanged while the bioidenticals were introduced (edit: Cymbalta was mentioned below by Sharon as a med also used during the hormone titration period! Triggered a remission?). Why isn’t hormone replacement therapy listed in the National evidence-based guidelines? Why don’t migraine specialists pursue this line of treatment? These are the questions you have to ask.

Scott

Rockergirl,

All VERY GOOD questions. No, there is no compelling evidence for this as a migraine treatment – I have no idea about MddS. Yes, both Molly and I apparently had abnormalities in our tests. I don’t think anyone has perfect levels of these hormones and as you very smartly asked – what are the correct levels? They are usually based on a range and that range is derived from looking at the average in the population. But it still doesn’t mean that by cranking my DHEA way up that it will change anything. I doubt it’s an exact science getting a person’s levels just “right” and is more hit and miss given the variability throughout a given month.

Actually there is another person I forgot about who also went down this route. Roberto (he has a clinical background) put me onto it in the first place. He had “abnormal” readings in some areas and was put on about 12 different bios/ various supplements daily. He reported that he felt better for a number of weeks and so I was in. Not long after he was not better and in the end it just didn’t work though I have to hand it to him in that he toughed it out for months and months on the program endlessly making adjustments to the hormones. In the end he started taking nortriptyline and wouldn’t you know it, he was well again and last I heard, still is. Go figure.

An excellent read from Science-based medicine if you feel like you’re up for a true analysis on this topic. There are definite safety concerns and other things that should raise eyebrows.

Rockergirl – note the bit below on working out what is normal given the constant changes that occur. This probably explains why hormone therapy for migraine is not a first line or even 500th line treatment option in the US guidelines.

— Begin quote from ____

The whole “bioidentical” thing is a pseudoscientific concept: it is a marketing term rather than a scientifically meaningful one. Bioidenticals are promoted by celebrities like Suzanne Somers, a few maverick medical doctors like Kent Holtorf, proponents of “natural” medicine, patients who were frightened by the Women’s Health Initiative study of hormone replacement therapy, and critics of Big Pharma.

One of the biggest concerns is that “bioidenticals” are prepared in compounding pharmacies that are not regulated. The FDA has long been concerned about these pharmacies. In a 2006 survey, the potency ranged from 67.5% to 268.4% of the amount specified on the label, and there were variations within the same samples. Contaminants have also been found, including bacteria. Package inserts describing risks are required for FDA approved products but not for compounding pharmacy products.

Advocates claim that bioidenticals are safer than pharmaceuticals, but since they are essentially the same compounds, there is every reason to think they would have the same side effects. At least 3 cases of endometrial cancer have been reported in women taking bioidentical hormone replacement therapy.

Critics complain that Big Pharma is profit-motivated. Interestingly, bioidenticals are more expensive than the Big Pharma versions of the same hormones and they are not covered by insurance.

Proponents speak of individualising dosage to “balance” the hormones, but I can’t understand how they could ever hope to do that. The body produces several different hormones and the amount of each varies according to the stage of the menstrual cycle. With each constantly going up or down, how could you define balance or hope to mimic the natural state?

“Bioidentical” hormones may satisfy some of the psychological needs of people like Suzanne Somers, but they don’t satisfy the requirements of science-based medicine or even of common sense.

— End quote

And in the comments by the author:

“Most of the benefits Suzanne Somers claims for bioidentical hormones are not documented real physiological effects but due to placebo response, misinterpretation, or regression to the mean. The way advocates use them produces placebo responses, but these drugs are not just placebos because they also have serious physiological effects.”

http://www.sciencebasedmedicine.org/index.php/bioidentical-hormones/

My MAV was kick-started by perimenopause. I can even pinpoint the wild hormone swing that did it: I had sudden breast “augmentation” that I didn’t seek, right before I was scheduled for a mammogram. I’d never called to cancel one of those appointments, but I did that time because I was SO sore and I knew I didn’t want that kind of pain (I was so swollen, I thought I looked pregnant). A couple weeks later, “deflation” occurred, which I now assume meant a drop in what had probably been an estrogen spike. I then had my first ever dizzy spell, a severe one at that, complete with tunnel vision aura.

My mother had her first dizzy spell when she was the exact same age - she had to crawl to the bathroom because she couldn’t walk.

Hormone swings are normal in perimenopause. It’s no fun for a migraineur who finds that this is the major trigger for the dizzy manifestation of her migraine, but it’s a roller coaster ride, girls. It’s actually a roller coaster ride even when we’re in our younger years: if you look at a graph of all the female hormones doing what they’re supposed to be doing in a normal cycle, they go up and down through the month - every hour of every day there’s a different snapshot of which hormone is at what level on the graph. It’s just that they can swing way high and then drop suddenly when we get into perimenopause, and it’s a far less predictable situation then.

Trying to “balance” our hormones is actually a silly idea because there is no “right” level, but it’s an idea that lay people buy into. Hormone replacement therapy grew out of a need to treat the worst symptoms of menopause, not to “balance” hormones. Migraine treatment is for people who have migraine triggers - and hormone swings may be one of them. I’m glad I got diagnosed properly fairly soon after my first dizzy spell and got on Topamax, a proper migraine treatment, which has worked very well for the dizziness part of my migraine problem.

Scott, Jeanne in the article only took Cymbalta for 2 months in the beginning until the hormones started working and hasn’t taken any antidepressants or anything else since.