@quasar I see that you just joined Mayo Connect and I want to welcome you! It sounds as if you have had some serious issues with headaches and treatments that were not very helpful Thank you for sharing your experience. I'm pleased that you have found some relief.

Thank you @quazar for adding your experience and updating this discussion. I have moved it into the Chronic Pain group to help others find it. Here is the information about Biofeedback from the Mayo Clinic to which you referred http://mayocl.in/1oSW9p0 Like Teresa, I'm glad you finally found some relief. We all will be interested in hearing about your progress and sustained relief.

I read in your message that the desperate need for pain relief led you to try almost anything, and that on this journey you "met some weirdos". How did you evaluate the care providers and treatments your tried? What cautions did you take to not be sold "snake oil" cures? What tips would you offer other members who are equally desperate for pain relief?

Have you tried legal medical cannibis? I am impressed with it for pain relief.<br><br>

Colleen~why is legal medical cannibis for pain such an unknown? Do you know what Mayo's opinion of this is?<br><br>

Nancy, here are some articles from Mayo Clinic on the use of medical marijuana.

Medical marijuana See these webpages that answer the following questions http://mayocl.in/2c3X2cz & http://mayocl.in/2dnZWer
- When is medical marijuana appropriate?
- Is medical marijuana safe?
- Is medical marijuana legal?
- What you can expect
- Certification and use at Mayo Clinic

Marijuana (Cannabis sativa) http://mayocl.in/1vnfie8
- Information about its use, safety, dosing, interactions and references

From Minnesota local news outlet Post Bulletin
- Mayo Clinic, OMC let docs decide about medical marijuana http://bit.ly/2dNHFpZ

Mayo Clinic spokesman Karl Oestreich said in a statement the clinic has developed a policy for its health-care providers.
"Participation in the Minnesota Medical Cannabis program is voluntary for health-care providers. Mayo Clinic has developed a policy and associated procedures to guide providers who choose to participate in the program," Oestreich said.

Thank you Colleen Young. Also I have a friend whose 14 yr old grand daughter is struggling with Von Willerbrand disease. Do you have a group to join on this and if so how do I get the info to her grandmother and mother as requested?<br><br>

Well, Colleen, to be honest, I've tried several "snake oil" cures. At first, the doctors diagnosed my headache as chronic migraines and when the prescription drugs they gave me didn't work, every friend, neighbor, acquaintance and cousin of an aunt of an acquaintance was suggesting something new. I made sure that any supplements I purchased had a money back guarantee, and I used that guarantee several times to get refunds for stuff that didn't work. Those were the early years, and I learned a lot. Now I'm a lot more cautious. It usually takes a couple visits to form an opinion about a new provider, so there's always a risk that you'll spend some money before you realize the person is not reputable.

I've seen several alternative healthcare providers, and here are some suggestions re: vetting new providers. Though a lot of it seems like common sense, it can be easy to forget simple things when you're in pain or desperate to find relief for a loved one. My mom still calls me with suggestions from daytime tv! My numbers help delineate thoughts, and are not necessarily indicative of importance.

1) First and foremost, check the state licensing board to find out more about the person before the initial visit, whether they are actually licensed or if they've had any disciplinary action. Where I live, acupuncturists and other therapists are required to be licensed.

2) I also check Yelp for any reviews. You'd be surprised at how many licensed professionals are reviewed on Yelp. You can always Google the person, too, and that might reveal comments on people's blogs or other review sites.

3) The next thing you might consider is the location of their business - is it in someone's home or an actual office space and how long have they been there. If they just moved in, you might look for previous addresses or business names. 3) It's also important to note how the person likes to be paid, just so you can be prepared, but it can also be informative. Cash only might be a red flag.

4) Aside from all this, ask for credentials - where the person went to school, how long have they studied and where. My current acupuncturist studied under a woman who not only learned medicine in China but has also been to med school and is a licensed physician in the US. There was a certain measure of comfort knowing that my acupuncturist was taught by someone who had both perspectives on health care.

5) In the meeting, I pay attention to what kind of information the provider asks about. If they just want to jump right into a treatment without asking a lot of questions, to me that says the treatment isn't really tailored to my problem and therefore unlikely to be effective. Why would I pay money for that? I'm seeking a professional opinion on my treatment, and so I expect a treatment that is carefully considered.

6) I also appreciate it when providers spend some time educating me on the treatment and its potential effects. Obviously, I'm wary of side effects given the horrible time I've had with prescription meds. This wariness has seeped into my view of alternative treatments, too. So, I always consider the downside to trying new things. If i'm just going to be out money, then that's an easier risk to assess than if the treatment is going to make me feel worse. if the treatment is going to make me feel worse, will it be a long time or brief? Will I be confined to the house with a horrible GI reaction? I look for knowledge in my providers -whether they really know what they're talking about and whether they're going to share it with me. I've seen three acupuncturists, and the difference between the first and the last is like night and day. The first explained nothing, taught me nothing, and didn't spend much time on questions. Ultimately that one achieved nothing except taking my money. The one I'm seeing now spends a great deal of time educating me on how Chinese medicine works, what my pulses mean, how the body systems work, and what I can do in my daily routine, with my food, and with my body to improve my health.

7) The other thing that I like to get is corroboration. It isn't always easy, but it is possible with a bit of effort to check the information given to you by a provider. I've been a part of several groups within Kaiser and nothing I've learned in those classes or groups has contradicted what I've learned from my current acupuncturist. Yes, Chinese medicine is a different approach, but if your provider spends time educating you about it, then you'll find there's a logic that is easy to follow and verify.

8) With supplements and essential oils and stuff like that, it's important to verify what the ingredients are and where they're sourced. That can be challenging to do if the company selling it doesn't want to give you that info, but that reluctance is also informative. The same principles apply with vetting products as with providers. The good news is that, as I mentioned earlier, many products come with a money-back guarantee. I also feel more secure if someplace like Whole Foods carries a supplement. Though I don't rely on their corporate integrity to ensure the products actually work, I feel like there's an added layer of protection in their decision to stock an item vs. whether the item is only available online, and there's also a person at the store you can ask about the product.

I hope this helps. The biggest thing for me is the reviews - being able to get firsthand info about a person or product is one of the benefits of social media (imo). Though it's true that some of that can be faked, more often than not, you'll find helpful information that way.

Hi Nancy, The best group to ask questions and share about von Willebrand disease is in the Heart & Blood Health group. We will ensure that the mother and/or grandmother is connected with others who share similar experiences. I'll write to you more fully in a private message so that we don't derail the topic of daily persistent headaches with our tangent 🙂

@quazar what a terrifically comprehensive answer of your diligence. Thank you. In fact, @predictable took note of your response and recommended that it be used to start a new discussion to garner conversation specific to this topic. I might suggest cutting and pasting it to the Just Want to Talk group https://connect.mayoclinic.org/group/other/

@predictable would you like to suggest a title?

@colleenyoung, @quazar, I'll try to come up with suggestions for a title. That might result in a suggestion for a whole new discussion group, because the information and Quazar's proposition seems profoundly important. Please go ahead with your current presentation plans while I take care of some personal problems at home.
Martin