Teen Daughter Gets "Accidental" Relief from Tinnitus

Discussion in 'Introduce Yourself' started by MomtoGG, Sep 28, 2016.

tinnitus forum
    1. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      My daughter has tinnitus. She was diagnosed with mild NS hearing loss at age 4 yrs and uses hearing aids. Tinnitus has just always been there for her. We are treating gastroparesis with extra strength organic 20:1 CBD/ THC blend. We have had very significant relief from gastroparesis GERD & chronic constipation. My daughter told me yesterday that her tinnitus has been gone for weeks. She says "Mom, the oil is helping everything". I'm blown away by this "accidental" effect of the oil and wanted to share.
       
    2. Tim Hogan
      Disappointed

      Tim Hogan Member

      Location:
      UK, England
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Cold/Flu (Minor) >>> Botched Acoustic Reflex Test (Severe)
      Whats the specific name of the product she is using?
       
    3. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      Hayleigh's Hope extra strength 20:1 in safflower oil, out of Colorado Springs. She did start on a different oil, but it was more expensive, requires an MMJ card & requires me to travel to get it for her. The new oil is organic and has almost the exact ratio & concentration if CBD to THC as the first one, but I understand it can be shipped to all 50 states, UK, Canada etc.
       
    4. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      @MomtoGG

      thank you for sharing this! It is amazing that it worked for your daughter so well! Is it that one: https://haleighshope.com/product/sku-hh1s/.. unfortunately that is super pricey for me, but I would really like to give it a go.. have to think a bit about it. :)
       
    5. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      It is expensive. We are using extra strength.https://haleighshope.com/product/sku-hh2s/ It's even more expensive than the one you linked. I think that's recommended if person is over 90lbs. The company has someone to talk to, but their focus is on epilepsy mainly. It's interesting to me that tinnitus may be a "sensory type of epilepsy". This oil is used in a group of kids with intractable types of epilepsy. We had to really figure out the gastroparesis ourselves. I'm not advocating this specific product, but without any doubt it has worked for my daughter. I think what's important is the high CBD ratio to THC that makes the difference. I don't know if this works because it's neurosensory hearing loss & tinnitus vs traumatic etiology. I just don't know. This totally surprised us. We were using it for gastroparesis. Just for the record, I'm a mom and nurse and don't have any relationship other than customer with Hayleigh's Hope. The first oil we used was called Iovia http://groundswelldenver.com/portfolio-items/iovia-precision-dose-tinctures/ We used x4 strength
      I read research this morning where they used 1:1 CBD:THC and it wasn't helpful. I read online a section of Textbook of Tinnitus that mentions the possible role of the endocannabinoid system in tinnitus. All new to me but fascinating. http://link.springer.com/chapter/10.1007/978-1-60761-145-5_79
       
    6. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      @MomtoGG

      oh wow, that is indeed a lot.. :( But it really is interesting that it is primarily designed for Epilepsy.. since Tinnitus and Epilepsy seem to have a similar root. I will get in contact with them and see if I'll give it a try. But really interesting, thanks again for posting it!
       
    7. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Thanks, please keep us updated...
       
    8. Champ
      Woot

      Champ Member Benefactor Team Tech

      Location:
      Boston, MA
      Tinnitus Since:
      1/2013
      Cause of Tinnitus:
      Acoustic trauma from headphones
      Is this legal to buy in the US? I'd try it but @ $300 I want to make sure I'm not doing something illegal.
       
    9. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      It is legal. It's <o.3% THC , which technically classes it as hemp. It is classed as a botanical extract. They can make no claims that it treats anything. They do produce oils with higher THC content, but an MMJ card is required. Again, I'm not touting this as a miracle cure. Maybe it works for some tinnitus types & not others. Maybe it only worked for us, but the research may suggest differently.

      I'm wary & not advocating people run out and spend all the money. I don't want people to be disappointed based on our testimony.

      It worked ( by accident) for my daughter. We bought it for helping her GI issues. Hayleigh's Hope ships overseas to UK, & all 50 states. We were thrilled with how it has helped the GI disorder my daughter has had diagnosed also at age 4 yrs. She's 13 yrs now. We had no idea it would address the tinnitus. My daughter is a pt at Colorado Children's and sees audiology. She has hearing aids and FM. We always just thought she'd always have tinnitus. She started 20:1 CBD oil in June.

      For the kids getting this oil for epilepsy, parents are trying frequency & doses to get what works. It is not a benign medicine. It is from a plant, bought over the counter, but is still very much a real medicine. It is processed through the cytochrome P450 system in the liver. People taking other drugs need to be aware of drug interactions. There is a Facebook private group that can help with some of that info for people who buy from Flowering Hope/ Hayleigh's Hope.

      https://www.projectcbd.org/article/cbd-drug-interactions-role-cytochrome-p450

      Talk this over with your doctor. I am not a doctor and don't know enough medically or about pharmacology to make a recommendation on this topic.

      Again, I'm not advocating this, merely explaining how it helped my daughter. Everyone using this type of oil needs to talk with their knowledgable health care practitioner and form their own opinions/decisions based on any potential risks.
       
      • Informative Informative x 1
    10. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
      @MomtoGG registered only to post about this product?

      $300 bottle of nothing?

      Moderators remove and ban this scammer!
       
    11. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      Heart breaking. I did just register. That is correct. You can believe the scammer thing if you want. I don't care. Perhaps this type of information for isn't popular? It's not mainstream. You are right. We have had to make adjustments to get my daughter the oil, but I can tell you, it's been 100% worth it. I'd never ask anyone to buy anything. I was asked what the product was in the first reply to my post. I shared, but not without personal risk to my privacy and accusation against my integrity. Have the moderators PM me or call me. I actually registered because I wanted to share this with people who have tinnitus. My daughter has had health problems for many years. Tinnitus was the least of our problems. We were totally taken aback when my daughter shared this yesterday. I was making a video about her progress with her GI issues when it came up. She has sleep apnea, too. Muscle problems, etc. Wondering whether it's worth speaking up about this any further.

      Review my first post. I described the chemical constituents of the oil, not brand. I was asked by people in the forum which brand we used.
       
      • Agree Agree x 1
      • Friendly Friendly x 1
    12. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Thank u @MomtoGG for taking time to write this. Glad to hear your daughter has had some good results for her other conditions too - and resourceful parents!
      How loud was her T, when could she hear it most?
      Many thanks
       
      • Like Like x 1
      • Agree Agree x 1
    13. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      This type of response from the contributor leaves me feeling vulnerable and definitely naive to post so openly here. I hope some folks got the benefit of my information. FYI Steer clear of products with high THC. From what I've read that makes tinnitus worse. I'm requesting the moderators remove my posts because I don't want to be subjected to abuse. I am removing the posts still open to edit.
       
    14. Champ
      Woot

      Champ Member Benefactor Team Tech

      Location:
      Boston, MA
      Tinnitus Since:
      1/2013
      Cause of Tinnitus:
      Acoustic trauma from headphones
      Do not make posts like this please. If you feel like there is a scam going on, message the mods. Do not publically shame new posters who are coming to bring helpful information regardless of what you think.
       
    15. Champ
      Woot

      Champ Member Benefactor Team Tech

      Location:
      Boston, MA
      Tinnitus Since:
      1/2013
      Cause of Tinnitus:
      Acoustic trauma from headphones
      Please don't delete anything. This is a conversation worth having - we already have a CBD oil thread and this might have some different results/information than the other one.
       
      • Like Like x 1
    16. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Please stay on the forum, people can become sceptical because they are so worn out from trying different things when they've had it for years.
      Thank you for your info, might try the product, given me a lift...
       
      • Like Like x 1
    17. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
      I apologize if you are sincere! Sorry!!
       
    18. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      Thank you for your apology. Thanks you for fellow members words of encouragement & support. I am sincere. I genuinely wanted to share our experience. This has taken us all be surprise. I've always been anti drug, never smoked a joint or anything in my life. My professional life was about caring for others. I was a nurse & in grad school until I had my daughter and life changed. An elderly man I garden with was making medicine from a plant he grew himself and said it helped his migraines. He offered it to me to grow, but it was just a completely new world to me. He encouraged me to look into it for my daughter and I haven't looked back. Being from main stream medicine path, we started out by going to two of the MMJ MD offices in Denver. The doctors
      don't advise ( the law) , but they also don't even follow up with you. One did tell me where to buy the medical oil he preferred ( MD not meant to do this either) but it was costly. I was scared to try this, but my daughter was told she needed a feeding tube in June. I figured what did we have to lose? My daughter told me yesterday this is life changing for her, but she didn't want to tell any of her friends because of "preconceived notions" about cannabis. They also run a very active drug prevention program in our school and she's worried they think she's a pot head. It's been a very difficult road for us and not because of tinnitus. I never joined any tinnitus forum or even researched tinnitus before, because I was was so busy just helping my daughter eat ( four feeding programs later), get relief from nausea, stomach pain, muscle cramps, sleep apnea etc. It's why I never joined any tinnitus groups. After getting into the community of people helping their kids with epilepsy, we learned there were cheaper oils, (I know right? ) and that's what I shared on request for the info. It still costs a blooming fortune!Also, please don't misunderstand me, I'm not meaning to minimize tinnitus. I came on here because I know it is such a debilitating condition. I was just so focused on the basics for my daughter - eating, sleep, pain.
       
    19. Kazue

      Kazue Member

      Location:
      USA
      Tinnitus Since:
      09/19/2016
      Cause of Tinnitus:
      Unknown
      MJ is the magical cure. It has killed cancer cells in many people. I'm not going to deny the fact that it may cure T, 100% plausible. There have been people saying it made their T louder because they were anxious. However, most of them smoked it. I'm sure it would work in an oil form. Believe what you want.
       
    20. Hopeful1
      Depressed

      Hopeful1 Member Benefactor

      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Loud Music
      Last edited: Sep 28, 2016
    21. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      I'd recommend watching this entertaining and informative movie to begin understanding how the human endocannabinoid system was discovered in the 1990's and the enthusiastic NIH funding of said overseas research. http://mechoulamthescientist.com.

      It's now recognized that all animals above invertebrates have an endocannabinoid system. We produce our own endocannabinoids
      and their function in the body is integral to probably every metabolic process. Specifically, look at anandamide ( our very own endogenous cannabidiol compound and tinnitus)
      http://www.actamedicamediterranea.com/medica/2016/med2016_pag-903-909-1.pdf

      The federal government holds a patent for cannabidiols for medicinal use despite its schedule 1 listing. I had to get past the fear mongering and misinformation. The days of "Reefer Madness" may be long gone, but the propaganda has seeped into our very collective psyche. I encourage an open mind. Look at the new information and see if you come to new conclusions. http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=/netahtml/PTO/srchnum.htm&r=1&f=G&l=50&s1=6630507.PN.&OS=PN/6630507&RS=PN/6630507

      The University of Vermont Medical School just started the first medical university credit Cannabis Science in Medicine upper level course in the country. You can watch five free medical school lectures on their website to get started.
      https://learn.uvm.edu/com/program/cannabis-speaker-series-from-botany-to-medicine/

      Phase 3 clinical trials ( human) are underway in the UK using isolates of the plant. http://www.gwpharm.com/GW Pharmaceuticals Announces Positive Phase 3 Pivotal Study Results for Epidiolex cannabidiol.aspx Parents are already giving the oil version of this new drug and saving their children's lives. I thought our situation was difficult until I read about these children suffering from Dravet syndrome & other life threatening conditions and getting relief and ask why you wouldn't give it. http://www.floweringhope.co/testimony.html
      Just click on their photos to read their stories.

      I'm not advocating smoking recreational marijuana with a high potency of THC. Apparently, even 1:1 THC with CBD can make tinnitus worse. I'm saying my daughter benefitted from a high quality, lab analyzed oil high in CBD and so low in the psychoactive THC, that it's no longer called cannabis.
       
      Last edited: Sep 28, 2016
    22. Hopeful1
      Depressed

      Hopeful1 Member Benefactor

      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Loud Music
      Can you point me to a research paper like the one attached (which says it is unclear if it aggravates tinnitus) to support it works...FYI people in this forum confirm that medical man. aggravates it.
       

      Attached Files:

      • Like Like x 1
    23. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      I agree that there is research evidence in rats that 1:1 CBD to THC can aggravate tinnitus. https://www.ncbi.nlm.nih.gov/pubmed/25852639
      Plus, there are lots of anecdotal reports of people smoking cannabis and their tinnitus worsened. This is real. I acknowledge & recognize those reports. Those are the fundamental reasons I posted earlier - this is our experience and I can't generalize it to other tinnitus sufferers.

      I'm not at all stating it's a panacea for all types of tinnitus or that all types of cannabis are effective or beneficial. I'm saying my daughter has neurosensory hearing loss with other global health issues, plus tinnitus. High CBD - LOW THC oil worked for her. There is no psychoactive high associated with this low THC oil and the delivery route is not inhaled, but sublingual or oral.

      This oil is not the stuff you can just buy recreationally in a dispensary that folks might smoke to get high. In fact, there's evidence that those recreational products are much higher in THC than they were, say twenty years ago, because of selective breeding and prohibition.

      High CBD oils with low THC hold no interest for people who want a high and from what I'm reading those may be the very products used that aggravate the underlying tinnitus condition. Just my thoughts on that. Please share with me if you have a better understanding.
       
    24. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      I have yet to try a high CBD oil. I've smoked/vaporized cannabis for years, and ever since I developed tinnitus I had to stop as it would make it much louder.
      I specifically purchased a high CBD strain to try. I have thus far only vaporized it, and although it calms one a bit, it definitely has of effect at all on tinnitus. Do you really think it's possible that an oil will make all the difference? I'd be definitely willing to try.

      What dose are you giving your daughter? Where should a guy start?
       
    25. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      Candy, I'm not sure I know what level her tinnitus was at. When I asked her what the sounds were like, she could sort of replicate a 2 sounds, low constant sound and a slighter higher one. She said the sounds were present most of the time, but not all of the time. She's also super sensitive to environmental loud sounds and often covers her ears at the fireworks demos etc. I'm curious if this is still the case and will need to watch her to see. Sorry I don't know more. I'll ask the audiologist if she has given her some test for tinnitus. She saw ENT MD to get approved for heading aids, to rule out other health reasons for hearing loss, but I don't know that they did a special eval. of the tinnitus.
       
    26. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      Ecip
      This worked for my daughter. I can't tell you what dose to use. This possibly could make your situation worse. I'm sharing what worked for us and I'm not generalizing that it works for tinnitus. My daughter has neurosensory hearing loss & tinnitus from early childhood. We didn't use it for tinnitus, but discovered this week that the tinnitus had been gone for a few weeks. I don't know exactly how long it took to clear the tinnitus, but she never mentioned it until this past week. She's been on oil since June '16. This was not a one time dose deal where miraculously tinnitus was gone. She had at least been taking twice daily oil for a number of weeks for this to happen, and it was for GI problem - not tinnitus.

      We used an organic, lab tested, whole plant "hemp"oil, grown by a botanist adhering to strict safety criteria for very sick kids. The solvents used to extract the oil are all organic & plant based. I think this is critical to quality oil in this kind of free wheeling market with almost no provision for safety. We can review the batch number and lab analysis.Legally, so low THC it's classed as a botanical extract, we use it as a medicine with precise doses. Everything I read says regular recreational cannabis & high THC can aggravate this condition. I did not just grab a high CBD oil online. First, we went through an MD and then bought oil with the MMJ card from a medical marijuana dispensary in Denver. I did more research and found a different grower/ dispensary for subsequent purchases. I needed transparency of production and testing. I called the grower's staff and went and visited them, taking time to drive the four hours, stay overnight, meet and discuss the product, review lab analysis, and then returned home. I suggest if serious, visit the place you buy the oil, check they are truly testing the oil in a state licensed laboratory. Read about how oils vary, from the outdated solvent RSO types, to the organics. I think chemical additives could mess up tinnitus. Some plants are even sprayed with pesticides or have plant diseases. When using the weed you can buy recreationally or oils that are not tested for molds, pesticides etc. , you are not even comparing apples to apples. Find an organic producer and don't just accept when they say they are organic and tested, go see and learn about how quality oils are produced. I can't stress that enough. Sorry to sound preachy, but I wouldn't put something I hadn't fully researched into my daughter and I hope that others will similarly research their product and respect their health.
      The first oil was concentration 38mg CBD:2mg in 1ml THC. The second oil is a very similar concentration, with less than 0.3% THC. She was 84lbs when we started. We give 0.4ml x 2 day. ( we use 1ml syringe we special ordered online to get dose exact). This dose was actually recommended by MMJ MD in Denver( same doc on the Sanjay Gupta special) for GI problem that we were actually trying to treat. We tried to lower the dose because it was so effective almost immediately for the GI problem, we figured maybe we were giving more than was necessary. We tried lowering it & GI symptoms came flooding back and so resumed the original dosing. Sorry, I can't give short answers on this issue. We took great care and gave due diligence to finding the right medicine. I'd hate to convey that we just jumped in and bought "weed" or oil & it solved all our problems. My daughter is also followed by our family doc who understands her medications and conditions. She can't prescribe the oil, but makes sure my daughter is medically cared for.
       
    27. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      Ok, I'll have to just play with the dose.
      I'm looking at ordering this:
      https://www.tweed.com/collections/available/products/bedrolite

      It's 9% CBD, very little thc. Barely any.
      Tweed uses a different process to extract the oil without any solvents at all, leaving a pure product.
       
      • Like Like x 1
    28. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      Just checked it out. Nice it is in safflower. Note it is almost a 1/4 strength of what I gave my daughter. Best wishes with everything.

      Just have to say, so edited.

      Aside from actual milligram dose, the oil you mention is a 10:1 ratio CBD to THC.

      We used 20:1 and x4 strength i.e. 38mg/ ml CBD.

      If you try to match CBD dose by just increasing amount of the 10:1 oil, you'll end up getting much more THC. Just FYI.
       
    29. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      The 10:1 ratio they mention is that 10ml of oil equals 1 gram of actual dried product.
      The CBD is 9g and THC is <1g.
       
    30. MomtoGG

      MomtoGG Member

      Tinnitus Since:
      2007 (child diagnosis at age 4yrs)
      Cause of Tinnitus:
      Don't know. Has neurosensory hearing loss etc.
      It specifically states 9mg/ml CBD & <1mg/ml THC . This is considered a 10:1 ratio. Seek advice from a MEdical Doctor. This oil mix you linked to has a higher proportion of THC in the dose.

      Please be clear, this oil you linked to is nothing like the ratio we used, which was 20:1. We used what's classed as hempoil, less than 0.3% THC.


      This product you are talking about has much more THC, especially if you try to take a higher CBD dose.

      Please, if you are considering this, discuss the decision & doses with an MMJ MD. Share with the MD our anecdotal account. Please don't do this without seeking the advice of an MMJ MD who understands the mixes / doses of oils. It is not worth risking your health.



      I'm going to leave it that. Thanks.



      see copy & paste from the page you linked.







      From the website
      THC: <1mg/ml / CBD: 9mg/ml

      Total content: THC <100mg / CBD 900mg
      Equivalency Factor: 10ml = 1g
      Quantity: 100ml
      Ingredients: Sunflower oil
       

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