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Update on my brain issues.

Discussion in 'Reactive Hypoglycemia' started by Lamont D, Feb 8, 2021.

  1. JoKalsbeek

    JoKalsbeek I reversed my Type 2 · Expert

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    I'm so sorry things have been so bad. Fingers crossed the neuro'll be able to help when they see you.
    *hugs*
    Jo
     
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  2. zand

    zand Type 2 · Master

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    Today is the first time I have read this thread. I tried before but just couldn't. So sorry, I wanted to read it, but couldn't face it. There's alot I can identify with here. I was like you describe when my parents both died within a couple of weeks of each other.

    Now more recently, my thought processes just aren't the same as they were 18 months ago and I don't have the brainpower to write much here now. That's my new normal and whilst living in the past doesn't help it can help while we find out who we are now. It's the past that got us to where we are now, and nowadays the past gives me comfort as I deal with today, that's not the same as living in it.

    My food tastes and choices have changed since catching Covid19 in March 2020 and I think I may now have a B12 deficiency and have booked a blood test.

    Hugs and best wishes
     
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  3. lucylocket61

    lucylocket61 Type 2 · Expert

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    This is so true and helpful. Thank you.
     
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  4. jjraak

    jjraak Type 2 · Well-Known Member

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    As said @Lamont D ..a touching read

    Clear how much it worries you, but would I be right in saying the councelling had helped, somewhat..a reason for some optimism I thought.

    While not the same as you, I too felt that moment of not being "Me".

    Mine was sometime after DX for T2D.(2018)

    I never got to the bottom of it, however the councelling itself, did help draw out some conflict I thought I had resolved internally, but clearly hadn't.

    What I found most helpful,
    though it was after I'd had some time to accept, the one on one therapy, hadn't given me and probably could never give me the answers I sought,
    So some acceptance of that had crept in, was BCT.

    BCT...it gave me TOOLS to use when I got too anxious
    I'm more a practical man, and lovely as the chars were, I just wanted get on and "FIX" the problem .
    So having a tool to assist worked best for me

    When I got episodes, the ideas I was given helped reduce them to manageable levels.
    Not perfect, but so much better then I was.



    During my waiting times for therapy appointments, I took it into my head to decorate a small wall by one of our windows.
    It was a dark area lacking light I thought.

    I had two old mirrors, one fitted into the space, the other was too large for the space, so i broke it and used as a mosaic, to reflect light back into the room, for a section

    Wife liked the work, jokingly suggested we name it, as all great art gets named. LoL.:hilarious::hilarious:

    Didn't like that I called it "ME"

    Because it reflects (;)) how I now feel mentally
    Mainly unbroken, but with areas that while still functional, NOT as before.

    Mine I believe was related to the T2D, and the anxiety levels went through the roof for me
    So "not me" as you so rightly put it.

    I hope yours can be resolved with a reduction in meds or effectively finding methods to help lower that anxious state.

    A long reply, hopefully adding that your not alone, and there can be light at the end of the tunnel for the anxiety side of things

    I hope you get the right help to get you to yours :)
     
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  5. jjraak

    jjraak Type 2 · Well-Known Member

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    Oh @zand , what a dreadful time you have had
    Such strength to cope with a that.

    Agree so much with the change in thought processes.

    Some times it feels like I'm wrestling my mind to think the way I WANT IT to, not how IT wants to think it should see a situation :rolleyes:

    Good that you are getting levels checked.

    I researched the issues with B12, and ended up watching a film in my signature, that outlined a variety of ways it can impact and conclusions once treated..uplifting stuff for B movie Tuesday afternoon Dr Quincy type film.

    Very recoverable if caught early, and other treatments if necessary are available

    Hope levels come back at a reasonable level and none of the above are required for too long.

    Take care
     
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  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    While I agree so much with how you describe it, I have moved forward and the counselling did really help. I do believe that I have been descriptive of my life in many posts and blogs. My life has been and still is not what you would wish on an enemy.
    One of the early remarks in counselling was, my brain couldn't cope with my passion and my working life being taken away, and followed by your life is going to change with the prospect of being unemployed until I retire.
    Because I have to keep repeating my life story to fellow supporters, who are still asking, and of course doctors about my medical history, my life plans is I have to work. Getting fit again after diagnosis gave me the confidence to take this job on, and I still believe that I was good at it. I know where I came from and I believe that I have achieved this life choice, I have worked my way and improved my life for my family.

    @zand, my life's priorities have changed, I don't want to live there because of the reminders that surrounds me. I have to be positive, I have to be me again. I don't want to live where I was nine months ago. I didn't even watch the England game last night.
    Football is in my blood and for most of my adult life, it has been my answer to my work and family, it was a release from the pressures of life. I don't have that passion now.
    How can I describe what you are going through, I have not experienced covid, nor long covid, like you, the battle of getting healthy is a continuous battle of your sanity and what you can have or not. A lot of how your energy levels have dropped through anxiety, depression, worrying, another day in paradise and possibly a b12 deficiency.
    It just goes on for you, another blow after blow wether real or imagined is so tiring and your brain is tired, and thinking becomes hard.

    I wish you well and my thoughts and prayers are with you.


    Keep talking, keep posting, help is out there.

    As always, keep safe.
     
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  7. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Thank you @jjraak .
    I really appreciate your thoughts on how the anxiety has got you feeling its not you.
    And yes I had two sessions of cognitive behaviour therapy, but it wasn't for me, except the breathing exercises, which I do every morning, also some relaxation techniques that is helpful, but as always in my life, I need to be busy and work at something, anything. But because when your brain is in constant battle mode, your body is not willing, because of the anxiety of actually doing it right, or what will people say if it's a disaster. So, the can't be ***** attitudes come out. And after deciding to do it, not do it and so on, you need a rest.
    As Neil in the young ones kept saying, it's heavy man!
    And the weight of decisions is so worrisome, so you actually have anxiety about your anxiety!

    I never had anxiety over the times I was misdiagnosed and the number of medical personnel, saying it's the type two that is causing your problem.
    My true diagnosis after so long battling with doctors, I was actually so pleased that I was termed non diabetic. Then through the initial couple of years after, finding what I had to do to control the condition was so revealing in how carbs effectively was killing me.
    I have never experienced stress or anxiety before, I had a determination to get on.
    I had never felt this way, I was completely paralyzed by indecision, which was contrary to the passion I had.
    I hit rock bottom, and stayed there, the realisation that l couldn't live there or think about what had happened, kept me there.

    I still have milestones to get past and certain things that I couldn't attempt, I do now without thinking about it. My concerns are rapidly going.

    But talking and sharing is so helpful.

    I love the mirror story and it does seem to be a reflection of life with anxiety.

    I do hope you can be more positive and use the mirror experience to drive more positive art projects.

    Keep safe
     
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  8. zand

    zand Type 2 · Master

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    lol was there one? I guessed I missed it too! :hilarious:
     
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  9. zand

    zand Type 2 · Master

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    I believe I have been fighting the wrong battle. I don't believe I will ever get back to being what I see as healthy now, this has all gone on too long. I need to just try to slow down the decline as much as I can, win some battles but not stress about those I lose.
     
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  10. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    I feel like preaching to the choir here. Don't give up, be persistent with your doctors, I can feel your pain, there is help out there, keep on trucking, be patient, the grass is not greener on the other side, be resolute, be easy on yourself, don't beat yourself up, we have the police for that.
    My best wishes. As always keep safe.
    Oh yeah, I forgot, live long and prosper!
     
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  11. zand

    zand Type 2 · Master

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    :hilarious::hilarious::hilarious:

    And I see Saka scored for England last night. :)
     
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  12. Gwennith

    Gwennith Reactive hypoglycemia · Member

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    Good morning ! That's horrifying and I am sitting here recalling my past two months of just the same thing with my memory and my friend told me she noticed it the day I walked out cause how do you explain that to anyone . So I went to my doctor's ( GP & Endocrinologist ) told them my story and I was treated like it was nothing and the did blood work . The results showed I am B12 deficient and was started with IM injections 1000 mcg and I went and researched this ( being an RN I am over curious .lol) and all my symtoms were right there as I read and it really angered me . I have been on metformin and I guess the daily GI upset gave me a malabsorption , so he cut the dose down from 2000 mg daily o 500 mg . I really wanted to quit but I have had good control of my 3-4 times a day hypoglycemic attacks ( non diabetic ) so I am obeying for now . I didn't tolerate the B12 shots , I actually felt worse to the point I couldn't do my daily acts of living , so I am now on 1000mcg SL and tried to do a titration of high dose for 6 weeks of 5000 mcg but I could tolerate that either ( headache , nausea, increase fatigue ) and I went back to 1000mcg sublingual .It's a month now and I finally started to feel better not 100% mind you but I would have taken less and I am probably 60-70% now. So with this said I hope you had that B12 lab included but if not run and have it done . My doctor told me after asking him if I would get better , I don't know and I'm here to say YES !!! I was looking for a nursing home . I wish you well Lamont our journey's have been very similar .
     
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  13. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Yes, I agree we have had similar experiences, and as an RN, you have been given a head start in understanding the dynamics of the reason we have hypos. Welcome to our forum @Gwennith.
    I have been fortunate over the years, now over twenty years since I started to get symptoms, that I was given a full blood panel every six months and with every test my endocrinologist did. I am non diabetic, I have no need for supplements or other meds than the ones I have been taking for anxiety, depression, and sitagliptin (Januvia) for an increase in my initial insulin response, which helps lower my spike if I have a few carbs.
    I was hospitalised on Easter weekend, and had a couple of blood tests, a scan, then a cat scan, and everything was healthy! The staff were brilliant, but had nothing to eat for me, I was offered cereal, a sandwich, a pasta ready meal, but nothing else. In the end they sent out for a salad for me.
    The extended oral glucose tolerance test, (I had six, I think!) Every time my blood from a cannula before, during and when I went hypo (every time!) Was sent to a specialist laboratory in London to be studied and checked for any discrepancies, such as B12.
    My insulin levels were also tracked, and because I was eating carbs, I had insulin resistance and circulating insulin, which was because of the secondary excess insulin response. (An overshoot is what it is called!)
    The insulin I was creating, the levels of insulin in my blood was high because of most of it was never used to link with the glucose to give me the energy my body needed.
    I like you with help from my endocrinologist, and reading as much as I could on the internet, not finding much because of the rarity and the lack of research and training for doctors who still don't understand how and why, metabolic conditions actually work and the dietary advice is one reason why I was nearly eighteen stone at diagnosis. I had hyperinsulinaemia, frequent hypos and was really ill.
    The answer and treatment was of course avoiding carbs.
    I am carb intolerant. The severity which i try to remind myself, I never want to go back and be like that ever again.
    And it works. Beware of spuds, they are just as bad as all the other carb laden foods.
    Other than a couple of hiccups, I have been in normal blood glucose levels since diagnosis. Eight years ago!

    Keep safe
     
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    #33 Lamont D, Jun 21, 2021 at 3:53 PM
    Last edited: Jun 21, 2021
  14. Gwennith

    Gwennith Reactive hypoglycemia · Member

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    Lamont ,
    Sorry I couldn't be of any help I'm sure it's a very scary position your in now and I really hope you and your doctors find the answer , glad you have a wife to help. Have you seen a neurologist ? ( I bet you have ) I was so frantic when this episode started I drove my doctors crazy . I don't think they know what's happening so they look at me like I am but I will continue to be proactive in my health .
    I worked for 11 neurologist before I retired for 15 years and Teva neuroscience for 8 years at the same time , I feel fortunate that I had such a hands on education with the Neuro practice to understand these difficult issues . I can't drive due to the B12 deficiency because my brain gets unfocused and I get blurry vision , in my case I get little help or answers but I feel better and will be patient because in my readings they say it could take more time , I have to build up my liver stores of B12 first , so I will be trying to increase the dose once I'm on it a couple of months .
    Stay safe and well!
    Gwennith
     
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    #34 Gwennith, Jun 22, 2021 at 3:01 PM
    Last edited: Jun 22, 2021
  15. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Yes, I had a zoom conference with a neurologist a couple of weeks ago, I'm currently waiting for a face to face appointment, he wanted to use tests to see what the recent developments I have been experiencing since being referred.
    It is still developing, the latest is similar to restless leg syndrome, I cannot stop my legs moving. Even when lying down flat on my back, I have to really force my body to stop moving.
    He did say that it could be a shaking syndrome, where as a result of the depression, anxiety and how my brain has adjusted to cope with the shock of the breakdown and nothing to replace my passion, I still have not found anything to replace my working life and the bottom line is I cannot get enjoyment out of all my interests, I have had since childhood. I can't get excited, I have nothing that I can look forward to, everything that I was, has gone, quite the reverse, I was such a social outward looking person, involved in many things, along with family and work. Looking forward to events and the time I spent meeting with professionals and being a part of something that I have done since childhood. I still am not interested in going out. Like today, it is sunny and spent most of the day reading in the garden, after doing the chores of course. I have a gift of organising working areas and a personality that is open and honest, my counsellor called me one of the good guys because of how I came across, using the experience of coaching staff and youngsters, and being quite successful in how I addressed issues that work always brings. I have met and spoke, talking to children, and professional development, from the youngest to the pros and addressed some of the big bosses in multinational companies.I was responsible for advising on workplace development, New model design to help the engineering and designers to produce the planning process into actual workplace development with recommendations on tooling, layout and team responsibilities.

    I have changed so much in my daily life. But I'm on my way back, I have achieved the baby steps that I needed to do, to be more positive, and I am. My life is now and the future is to come, it is my next chapter and I am certain that I will not, never be bothered by what happened to me, it's history, gone, no longer a part of my life, I want to enjoy my retirement, my physical health is really good, but I still need time to get off the meds that has helped so much, and finally find something I can get excited about.
    They can never take my special memories of what I achieved and the experience of being a part of a team that achieved so much, the great people I have met, being recognised as part of the team and given access to places that I could only dream about. The places and countries I have been to, because of work and my role in it.
    The hotels, the laughter, the excitement, the bloody van we travelled in, there is a book there, if I can remember most of it. The camaraderie of professionals and how I was treated by them. Despite the competitive approach to what happened on the field, the friendship within was special. I can say with all honesty that if life mirrored the experience of the friendship within the sport, there would be a completely different way of living and acceptance of how we thought and regard each other. Regardless of where you come from, etc, you were accepted as one of the team and a valuable resource for the benefit of everyone. To ensure that everything could be done to achieve success, to let the pros be able to think about the game rather than the equipment.
    Life is challenging, I have worked hard to get where I could have financial stability to help with living standards and see my kids and grandkids have everything that I never had, and give the love of my life, the respect she deserves.

    Keep safe @Gwennith , if you have any questions or comments, please do.
     
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  16. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Update, update, update!

    I went to see the neurologist last evening, this was a face to face meeting with my neurologist specialist. He asked me how I was and of course being more positive in my demeanour, he was glad for me. He then asked me to do cognitive exercises as was a diagnostic tests.
    After that I quizzed about various symptoms that I had noticed since my breakdown
    I asked him about diet, and he gave me a website address, he then gave me two answers. First was my symptoms show that I have developed another condition called Essential Tremor syndrome. He asked me to review what I could do to mitigate the symptoms. The second answer was, i don't know! Why certain things have changed and I am doing things automatically that I have never had before.
    Medication was mentioned but I refused, I told him that I really wanted to get rid of some of my meds, I have requested an appointment with my GP. I am now waiting for that now.!
    That was it.

    When I arrived home I immediately filled the eform to my doctors.

    And I have spoken to my GP, and because of my dietary issues she has told me to continue to eat as I am.
    BTW. The recommended dietary advice from the website, was so close to the eat well plate, and insisting that carbs were necessary for glucose for energy.
    I was laughing as I read it. It really tickled me!

    Ah well, the news keeping on a coming.

    Stay safe
     
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  17. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Update.
    Been to the doctors, because once again, the tablets were not working and was not helping me adjust to this new condition of essential tremor.
    You could say that it was messing me up, so me and the doc went through the symptoms and how those pills were doing to me.
    We came to the conclusion that the cocktail of meds, I was having, effected my brain function, primidone initially stopped some of the tremors, but it just went downhill after that.
    My doctor was relieved to see that my depression has improved so much and my blood sugar levels were in range. (As usual)
    So now from today I have been asked to try a very low dose of Gabapentin.
    My doctor and the pharmacy are gonna phone me to see how I tolerate the drug.
    I have also reduced my sertraline by 50g, so far so good, and hopefully down another 50g in four weeks time.
    After we had gone through everything, the question I posed was all the symptoms and tremors and my brain function, the extreme anxiety, why was I doing automatically all the new nuances and my marbled skin. It appears that the common denominator is starting the sertraline, which worked, however, as I have mentioned, the cocktail of meds hasn't helped.
    It's probably because I'm weird, and a hypochondriac! (Ha!)
    Once again my doctor was excellent, and understood everything about my conditions.


    Here's hoping that this works, stay safe people.
     
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  18. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    October update.
    In the past week, I have seen my GP, my neurologist, my optician and tomorrow my dsn for a flu jab.
    My right eye has changed a little and has the beginning of a cataract. And the optician said would I want similar style to my varifocals.
    I couldn't believe it! The glasses I have cost an awful lot, over £120.
    So I asked a couple or ten questions, but got nowhere. So I said that I didn't want new glasses, I don't have a problem with these.
    Anyway, nothing much from my neurologist. He couldn't see any changes in my condition but it hasn't got worse.
    My GP has been pleased with my positive progress and agreed with me that I could drop my dosage further to 100mg sertraline. So far so good.
    And more good news, a new member for our family as of last night. A healthy baby boy. And mother is doing well, my son i is smiling like the Cheshire cat.

    I do believe that my depression has lifted step by step and improving a little all the time, I have done the chores and the garden and went to the shops to get the wife something special for evening meal. Her demeanour is a lot better since and when she smiles, I find something to do. Ah well! It is unusual in these times to be happy, once in day, but twice! (Please don't tell the government!)

    Keep safe everyone!
     
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  19. coby

    coby Type 2 · Well-Known Member

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    Aww now that is truly a heartwarming read. xxx
     
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