1. Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
    Dismiss Notice

Have Hope & Looking for Resources

Discussion in 'Support Subforum' started by Marilyn Stardust, Dec 18, 2021.

  1. Marilyn Stardust

    Marilyn Stardust Newcomer

    I am new to this site and wanted to introduce myself. I have a lot of hope and am looking for resources that might help my 'conditioned response' in re: to migraines/smells. I have read Alan Gordon's 'A Way Out' and also use the Curable app daily. I only discovered all of this info a few weeks ago so am still new to it but eager to learn as I already see small improvements with the techniques I've learned and applied.
    My story: I am a 43 year old woman who has been dealing with chronic pain for the last 20 years. It all started when I was about 22 years old and I began getting daily severe migraines. I'm sure like many patients it's a similar story; tons of medical tests but nothing ever found wrong, tons of treatments tried (most w/ bad side effects and made it worse...here's one for ex. they thought maybe I was clenching my teeth so they had me wear dental splints 24/7 which ended up messing up my bite to the point that I had to puree all my food for a year because even chewing something as soft as scrambled eggs would trigger a migraine...all the while they'd say 'I don't know it helps everyone else' and I'd keep trying their treatments but it would keep making me worse). For the first 5 years I had a migraine every single day and it was hell...was put in hospital on DHE drip for possible rebound headaches which didn't help and was basically sent home with a book on headaches saying 'deal with it' and don't take anything for it not even tylenol...let me tell you that was another kind of hell. Long story short, over the years I found things to help a little here and there...discovered my biggest trigger was smells and I got a bit better avoiding scents...but it led to much isolation because there are smells everywhere in the world. And smells from perfume, scents in stores, gasoline, candles, laundry det, etc zoomed me into a full blown migraine in minutes if not seconds. Fast forward 20 years...in that time I also developed fibromyalgia, a couple repetitive strain type pains that tons of physical therapy never seemed to help, heartburn, jaw/TMJ issues, sleep issues and the list goes on. Trying to keep this short as I literally could write a book on all the therapies I tried from conventional to alternative treatments, as I'm sure many here could as well.
    I discovered this site because I began using the Curable app a month or so ago. And Alan Gordon's 'Somatic Tracking' really stood out to me and I found it helpful. So then I listened to 'The Way Out' on audible and just finished it yesterday which led me to this site. I definitely feel that my pain is neuroplastic esp with it being chronic and no tests showing anything wrong and it getting worse w/ stress but the biggest thing is the 'conditioned response' in re: to smells. I don't know if this is the case but I believe what happened is this. 20 years ago when all this started I had moved to an apartment in Madison, WI above a restaurant. They sprayed each month for cockroaches(being young I had no clue that could make you sick...myself now I'd think OMG I would NEVER be around that stuff)...but you had to move your dishes, they probably sprayed everywhere and all over the floor and my bed was just a mattress on the floor...in hindsight I probably was sleeping in toxic pesticides and not knowing it. It's no wonder I lasted only 3 months there and had to move because I got so sick (previously I did have migraines since age 12 like one a month in relation to menstruation but never daily and chronic). I was going to college at the time but I had to put my whole life on hold and nothing has been the same since. My theory is that my body was probably trying to protect me from the toxic pesticides but maybe got 'stuck' on the high alert? I have read of something called TILT (Toxic Induced Loss of Tolerance) where you lose tolerance after an exposure to something like pesticides...but I would think after 20 years my body could get back to normal. But maybe 20 years ago when I was exposed, maybe my body sensed it through smell even though I wasn't aware of that, so that somehow the smell/migraine connection got 'stuck' on so that for the next 20 years nearly any smell (well stuff like coffee or baked cookies and things I'm okay with but basically anything else like perfume, deoderant, soap, laundry det, air fresheners, incense, candles, gasoline, new items, wood, plywood, rubber, printed ink, even fresh cut grass, etc all seem to trigger migraine in minutes).
    Anyways, I really want to believe that pain reprocessing therapy could help me stop these conditioned responses (I have had some moments or hours here and there after listening to Alan's book where I felt lighter and the pain was gone for awhile and I had hope), but then for example the other day I received a magazine in the mail and went to look at it but then sure enough the smell of the chemicals from the new print triggered a migraine within seconds...and that's always how it seems to go with smells and it gets very frustrating and depressing because I want so much to have the freedom to live again or do simple things like wash my clothes and dry them and not get a migraine from the smell or sleep in a bed without getting a migraine (that's another long story on how I sleep on a couch that is worn out and falling apart for 20 years because every time I've tried to sleep in a bed a migraine is triggered and I'm hoping that's some kind of conditioned response too). And I know being frustrated does not help my brain be calm lol. I often say to people it feels like being a prisoner of smells(and the bed issue feels like Princess and the Pea) and I mostly have to stay in my home because going out in the world feels like traversing a minefield full of migraine triggering smells. I really really am hoping that pain reprocessing could solve this issue so I could live again.
    My life has still felt 'put on hold' in a way since I was 22...I never was able to do the usual of a career, marriage, family, home, etc because all my energy has been just spent trying to keep myself okay and take care of myself and get my health back. I had hope for the first time in a long time after listening to Alan's book, yet part of me is still fearful if it could help a situation like mine? I'm just trying to figure out how to use the techniques to cure my brain from reacting to smells with a migraine. I believe it has to be possible, but it's been my daily life for 20 years so seems a daunting challenge...but I am up to the challenge for sure and do believe that I can use my brain to heal myself...especially since nothing else has worked in 2 decades.
    My question is...I have listened to the book, taken notes and am doing everything outlined in the book...but I just wonder if there is a way to get any more techniques that could be specific to my case w/ the smells and migraines issue? Or anyone else's story like that I could read? It's my life dream to be able to live my life and do all the things I want to do(even simple things like going to a movie w/out smells triggering migraine or take a walk outside and enjoy it w/out a whiff of cut grass or laundry det. triggering migraine, visiting with a friend and not having to have anyone who comes in my home shower w/ my soap and change into clothes I have for them here in order to avoid smells triggering migraine...the list is endless unfortunately) instead of feeling like a prisoner of smells/migraine pain.
    I just didn't know where else to turn so I thought I'd take a chance and message here. Like I said the story is way longer but hopefully that describes it for the most part. Thank you so much to anyone who read this and to those who are doing the work in neuroscience and brain re-processing and for giving people like me hope that we can be free and live again.
    Thank you for taking the time to read this and I truly look forward to hearing from you :)
  2. Cactusflower

    Cactusflower Well known member

    Hi @Marilyn Stardust
    Glad you feel you’ve found your place and recognize neuroplastic pain
    Triggers: triggers simply another mechanism of masking our ability to reach into emotion. At some point in your life you began associating scent and symptom. Your brain runs with this. With TMS approaches there is no ‘treatment’ for individual triggers. That most certainly keeps the mind focused physically: on the smell. Instead, begin to think about your association to scent: pain is one. What are others? Can you do that thinking safely without too much fear of evoking a symptom? If not, this is the perfect place for somatic tracking! You can replace any word “sensation” with scent. Be in a quiet room alone. Begin to do some relaxing breathing. Feel your body in the space; what it touches - start to notice without seeing close your eyes. Hear far off in the distance now up close. Now focus a few breaths on your breath. Now, what can you smell? Air, perhaps some fresh air from an open window or the stuffiness of an enclosed room? What color can you associate the smell with? Now go back to breathing a few rounds, and then go back to seeing if you can detect a scent beyond the air - if you live by the sea smell the salt, if you are in a city try to smell beyond your home like cooking smells or ‘good’ smells. Now sense the body on the surface.. And so on.
    You can journal about your association to smells. The fear. The emotions associated with the smells, with symptoms, but only do this once or twice and also journal about other things.
    Alan Gordon does not use journaling in his book, but this site has a program you can work through (that he wrote) and utilizes writing and journaling. It is very important to focus less on particular symptoms and triggers but be aware of them. Awareness without fear is a big key to TMS ‘work’. Follow the instructions in Your The Way Out book for a few months - see how it goes. Add in a technique or two if you have need, but not much more. See Pain Reprocessing is a method you see some success with. That is your first step.
    Marilyn Stardust likes this.
  3. Marilyn Stardust

    Marilyn Stardust Newcomer

    Hi Cactusflower,
    Thank you for your suggestions. That is interesting and does make sense that focusing on the specific triggers might not be the most helpful. And yes I can visualize smelling something without it triggering any pain/migraines so I will start there as you suggested. And yes definitely my association to scents is pain and fear of the pain since for 20 years nearly every scent has triggered a migraine. But I do believe my brain can un-learn this. I tried the other day to see if I could go to a store and keep telling myself messages of safety in the hopes that would work, but unfortunately I still got a migraine and then got frustrated. I know it probably was too soon and reminds me of the story in Alan's book about how he tried driving 5 hours and all it did was make his pain worse. So I realize it's a whole other level that I'm needing to reach to get to the place where my brain no longer reacts with that fear. So I will keep doing the techniques and things (but without too much intensity! lol...I know I def have that trait so it's been a challenge to do it with a sense of ease but I can tell a difference when I am able to do so). So I will continue to move forward and 'Trust the Process' as they say. Thank you for the help and positive thoughts.
  4. FindingJoy

    FindingJoy New Member

    I would recommend a TMS therapist, maybe through the Pain Psychology Center? I know it's not cheap but this is your life and you've been suffering for 20 years.
  5. NCGal

    NCGal New Member

    I came across a site that lists and links to numerous free resources. Courtesy of Lara Birk. Check it out.

    https://www.thesagepractice.com/resources (Resources for Clients — The Sage Practice)
  6. Marilyn Stardust

    Marilyn Stardust Newcomer

    Thank you so much NCGal for the information I will def. check it out :)
  7. Marilyn Stardust

    Marilyn Stardust Newcomer

    Thank you FindingJoy I did actually reach out to a specialist(one mentioned in Alan's book) and I got some really helpful advice...so I will start there and see how it goes. Thanks so much and best wishes and Happy New Year to everyone :)
    FindingJoy likes this.

Share This Page