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My mom has an interesting history of drug use as a result from outdated science regarding migraines. Since our dad passed in 2015, my siblings and I have come to realize she is probably autistic (very high functioning). We live in Northern California, and I am curious to know what the legal process is to obtain her medical history. Would I have to hire an attorney to access the information? I, too, suffer from migraines and I am grateful to have access to modern medication with little to no side effects. I have done quite a bit of research in my journey to conquer migraines and would like to do a deeper dive in past treatments of migraines from the 60s 70s and 80s, in which I believe my mom participated. Thank you in advance for any tips you can provide!

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If mom is cognitive, she can request her own records. This is how I was able to get my nephews for SS disability. I wrote the letter requesting his records and he signed it. If you have Medical POA or can have her sign HIPPA paperwork, that may help.

My nephew was 19 when I started the process. Since my sister had passed, my brother had requested all his record up to 7 because nephew was being moved 2 states away. I found out when asking nephew's new doctor for records, that they had purged his earlier records and my SIL did not keep copies. Purging meant that there was no record, with them, that my nephew was born with birth defects. So had to go back to the previous doctor and got copies and had to pay $30 for the copying and mailing.

Your problem is, you have to know who Moms doctors were and what studies she was in. Depending on her age, the doctors may have died and their practises closed up. Records could be stored in a warehouse somewhere, purged, shreaded or burned. I am 74 and there was no storage on computers back then. I was still doing work manually up to about 1985 or so. There is not a Portal where a persons lifelong health records are stored.

Without Mom having kept her own records, I don't see how even a Lawyer can help you.

My Mom suffered from Migraines. She found that yeast and cheese set her off. My ex found it was certain brands of beer. Weird thing was, he could drink Budweiser but not Michelob which are manufactured by the same company.
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CaregiverRosie Jun 2023
Thank you! Interesting about the beer - also, if beer taps at bars/restaurants aren’t cleaned regularly, they build up tyramines - which are the same enzymes as what makes bananas and avocados turn brown - tyramines have recently been studied as a possible cause or trigger of migraines in some people. Cheese is a biggie for me too :(
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She can request her own records.
If you are on her HIPAA forms you can request them as well.
If she was is studies there is a possibility that all the info you want might not be available if the studies were "blind" studies her records may not indicate if she was on an "actual drug" or a "placebo"
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CaregiverRosie Jun 2023
Thank you, Grandma! I am going to check some of the articles on the NIH website about past research on migraines. If anything, it will be interesting...
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Only the patient has a right to his or her own records. The institution will provide them by law, but will not explain them. Some records are given in written form, some on computer portals and some provided only in institution where the client sits with their records long as needed. No one will answer questions regarding the records.

You surely can see an attorney but I feel if your mother is NOT incompetent and you are NOT her guardian or conservator, you will not get access to any of her records. Do check with an attorney.
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JoAnn29 Jun 2023
It really doesn't matter. There was no way to store records in the 60 and 70s other than by putting them in cardboard filing boxes and storing them. I doubt if those records have been kept for over 50 years. And if they are stored someplace, i doubt if anyone is going to go look for them for her. Its dirty work, I have done it. The 80s, computers were coming into their own and I doubt small doctors offices had PCs in their offices.
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Wow! I didn’t expect so many great and detailed answers so quickly! Thank you everyone! While my mom is 86 and mostly cognizant, she doesn’t remember certain parts of her past, probably due (I think) to the addiction issues. I do have several names of doctors from about 25 years ago to now, surely some are retired. I agree that it would be hard to track down her records any earlier than 25 years ago. I guess I am hoping there might be some notations from the pre-digital era. Interestingly there are a few articles out there that detail the history of these early migraine studies. I have thought about getting in touch with the author of one article. Maybe I can start there. Thank you all again!
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Another method to consider is Freedom of Information requests, if the results of past studies were under some government authority with a responsibility to keep records. In some cases you need to start a legal action in order to make FOI requests, but if that is all you want (ie not to go ahead with a case), it may not be too expensive to try.
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CaregiverRosie Jun 2023
Hi Margaret,
Yes, I have wondered about FOIA - I will definitely check this out.
Thank you so much!
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I just looked it up and for my State doctors do not have to keep records past 7 yrs from the last time they saw a patient. In studies the same thing even to only 3 yrs. If the study was conducted by private entity, they have a say how long records need to be kept. Storing is expensive if done off sight. So, old records need to be destroyed for newer ones to come in.

Caregiver, I too think your best bet would be the person who wrote the article.
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You might find more details in talking to a pharmacist about when specific drug classes were released.

Prior to the 1960's and 1970's, migraine treatments were mainly based off drugs (ex. Fioricet/Fiorinol) for other conditions. BTW, those two are addictive as the main ingredient is butalbital. Phenobarbital was also an option and it is now a class C-IV control substance.

In the late mid 1960's to late 1970's the beta blockers (ex. Inderal) were released as migraine drugs. The calcium channel blockers (ex. Topomax) came along in the early 1990's. Imitrex was approved for use in 1991 and started the triptan drug wave.

The next wave of CGRP medications for migraine started with the release of the first one -- Aimovig -- in 2018. Since then there has been at least 5 or more of that drug class to hit the market.

Midrin was used as a migraine drug from 1948 on but was discontinued due to not having FDA oversight. It then came back on the market and may or may not still be available.

Many other drugs were tried for migraine prior to the advancements we have today. Your mother may or may not have been in a drug trial that caused her direct problems while not actually leading to anything wider for the rest of the participants. So with that, the drug may or may not have ever been approved or the results released to the greater public.

If you have some approximate time frame that she was in a drug trial, you might be able to track down more by starting here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/ and here https://classic.clinicaltrials.gov/ct2/about-site/history or here https://www.nih.gov/health-information/nih-clinical-research-trials-you

There is also one other avenue you might pursue but it gets expensive quickly. Attorneys use medical records retrieval agencies. There are several and with a web search, you may find one in your area.

Good luck.
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CaregiverRosie Jun 2023
Oh wow, thank you, Trouble!! This is exactly the information I was looking for! The first really bad addiction I remember her having was to Fiorinal, in the early 70s - I was 7 or 8? - and Phenobarbitol sounds extremely familar. Then for decades, it was Tylenol and Codeine. About 15 (?) years ago she was put on a withdrawal medication for the codeine, and at 86, still taking Suboxone, which according to her doctor she will have to take for the rest of her life. To complicate matters, before withdrawal from codeine, about 1998, she was diagnosed with depression and prescribed adderall. And yes, developed an addiction to this as well, followed by the last 5+ years of a withdrawal process, and has just gone through her first year adderall free. I can't tell you the difference in her personality before and after adderall. Like having a whole new Mom! There are a few other things we have learned about her since our dad passed away in 2015, like she is definitely (high-functioning) autistic. I could go on and on. Its been a journey. Thank you again for all your help!! Are you by chance a migraine sufferer as well? You mentioned Imitrex (triptan) - That is what I am currently taking with about 75% success rate.
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Adderall is for ADHD. It is not used for depression. Its a stimulant. The one way you can tell your ADHD is because it actually works the opposite with ADHD it actually calms the person down. If not suffering from ADHD, it will make the person high. This article says a person with depression should not take adderall. So, your Mom may have not suffered from autism, she may have suffered from ADHD. My grandson suffers from ADHD and adderall works for him. The first time he took it he said it calmed his brain down. Made it easier for him to concentrate. ADHD people tend to be impulsive.

https://www.verywellmind.com/adderall-for-depression-4845418
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AlvaDeer Jun 2023
JoAnn, your description of adderall is what has caused it to be the most abused drug on college campuses. The kids are up and bright and perky all the time, and they DO do better, in fact, on their testing. Now when they wish to sleep, that's the other problem. They cannot keep it in manufacture anymore so much is it abused. I was unaware of it being used in depression and am amazed because honestly, these folks DON'T sleep in my anecdotal evidence. Netflix (think it is them; but could be Prime) has some great programs out there on drugs, Xanax, Adderall, et al.

We are such a drugged society, in all truth. Hard to keep up.
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I think maybe the Adderall worked because it was not depression causing the problem but ADHD.

"Like any mental health issue, if left untreated, ADHD can create a personal environment that makes depression and anxiety more likely to strike. There have been many studies that link untreated ADHD with other mental health challenges, such as depression and anxiety.Dec 28, 2018"

I will repeat, and this is from the doctor who told my RN daughter, Adderall will not work if you don't have ADD or ADHD. If you become high from it, you don't have ADHD.
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Yes Alva, Adderall in the wrong hands is like an upper. But it does not work that way when ur ADHD. It works opposite. It calms the brain down so the person can focus and concentrate. One problem is weight loss which grandson suffered from. Sleeplessness...he always did well here and he was here alot because of DD schedule. But he did not take a nighttime dose. He took it in the morning to get thru school. He did his homework when he got home from school.
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