Feel so good for a couple of weeks then bam, not so good.

[[Ga...]]

I am at 41 months post taper from a one year prescription of Valium prescribed by my GP for neck and head pain.  I have been blessed with really good windows, one that lasted for a couple of months, but now in a pattern of a couple of weeks feeling good, then get hit with another wave which sometimes feels like I have a bad case of the flu, or other times I feel like I have a UTI.  

Anyone else feel like they are on a hamster wheel?

Thanks,

GG

[[De...]]

Good Morning GG!  You know me well enough to know I'm right there with you at 37 months.  I thought I was home free last May.  Now not so much.

Foods are currently a trigger for me, so I'm thinking it has to be some interaction between my immune system and nervous system, probably all starting in the gut.  Have you ever noticed any particular pattern with the foods you eat?

Hoping you awake feeling better today my friend 

[[le...]]

Yes with you there. Yesterday had not too bad day, today woke up crying, life feels hopeless, lunchtime and still crying. Never seem to get more than 1 day in a row when feel better. Did have therapy session yesterday, whether that  was what triggered it, made me realise what godawful mother I had. Like someone flicks a switch in my brain and can’t stop sobbing. No discernible triggers just emotional roller coaster. If you get couple weeks feeling good my friend, doing better than me. Hope you soon bounce back x

[[Ga...]]

Firstly, Hello Deanna and Leann♥️.   Well, at least we know that we are not alone in this hellish recovery from benzos, AD’s and sleep meds.  What would we do without each other to support, encourage, and hold each other up?  I hate to think where I would be if I had not googled Valium and found benzo buddies back in 2018!  I am going to write a rather long post to share, and, hopefully, to address how diet and stress both impact our stages of recovery, in my experience.  Excuse the long winded approach!!!

I just had another round of tests, including another MRI, MRA and EEG, of course all proving that there is nothing wrong with my brain, my arteries, and no unusual electrical activity in the brain.  Luckily the neurologist PA was knowledgeable about benzos and fully aware of its dangers.  She said for a 76 year old female I am very healthy and I did perfect on the tests she performed, including walking on my heels and my toes, strength exercises, etc.  She agreed that the Valium had done damage to the gaba receptors and eventually I would get rid of the headaches, my worst symptom from the very beginning.

I can tell you this that stress is what keeps me from healing, i.e., recently my husband woke up one morning about three weeks ago with some scary heart symptoms, at the same time our washing machine overflowed, saturating carpet in a hallway and guest bedroom.  I noticed that that day of unexpected crises, I had no headache and the next week I remained pretty calm.  Got my husband out of the hospital with a diagnosis of Afib, and he is doing well on a new prescription.  Beginning today I will be dealing with workmen who will repair and restore carpet, floorboards, and drywall in the inside as well as in our garage where the water came through the ceiling.  As the stress has begun to build my headaches have returned most mornings, unfortunately!   

Now to the interesting part as relates to food and its impact on my symptoms.  Two weeks ago we housesat for friends on a beautiful lake close to our home and while there in a peaceful setting I awoke each of the three days we were there with NO headache and no other symptoms.  I walked a dog, kept the house immaculate, and even entertained another couple.  BUT, what I also did was fall down a step on the back deck and caused some minor injuries, which I dealt with with Tylenol and rest.  The bad part of this getaway is that I ate everything under the sun, including cookies, pizza, cheese, chips and dips, lots and lots of carbs.  
 

I can definitely report that this unhealthy diet has set me back and I am now back to having more symptoms, especially the morning headaches.  Yesterday I felt like I had a UTI, but a test at an urgent care said no!  I can tell that my body is now telling me that built up stress and a really bad diet is going to bring me down for a while.  I am now trying to get back to a better way of dealing with stress which in some way will always be with us, and to eating way healthier.  

One other interesting tidbit to share is that my doctor encouraged me to have our house checked for mold and mildew as maybe a possible source of my long time headaches.  We do live in a home made up of all cedar wood, set on grounds of mostly mulch, and nestled in a wooded area.  At this point I am willing to rule anything else out as to what is causing the headaches.  It is strange that when I am away from home I don’t suffer with symptoms, which just may be because I am distracting and away from a place where I have spent so much time in pain!

I am so sorry for the long post, but I guess I just needed to share some of the same things both of you are going through after so many months.  Stress and food do seem to be major triggers for us long-haulers, but I remain convinced that we three will heal.  Rome wasn’t built in a day and benzo recovery is non-linear, so we must continue to have faith that our day in the sun will come!!!

Hugs,

GG

[[le...]]

I must say food doesn’t affect me much. I do think part of mine is emotional stress, for years bottled everything up about my family tried to be “ strong”, as my therapist said you can be strong fir so long then you get burnout. I do find after therapy session am a complete mess. The AD’s did a lot of damage, am thinking maybe has get lot worse before it gets better, in order to let everything out. It’s amazing you got the all clear on the tests, anyway. I’ve had headaches for years, don’t know if you eat it but the one thing gives me a headache is chocolate. I used get lit UTI’s found fruit was causing mine so don’t have lot of it now. I agree eating healthily is sensible, fir months barely ate have git very thin, but trying eat properly now.

[[De...]]

Wow Ladies - we are definitely finding the common links here.  GG I had an interesting and similar situation this Summer.  One evening out of the blue my hubby felt unwell and had a rather nasty stomach bug.  It came upon him quickly and he dealt with it just fine, but while he was sick all I could do was worry and pray to God that I wouldn't catch it.  I felt my body rev up with that stress and definitely was stressed for several days with these thoughts.  Hubby recovered quickly and we then went about our routine, but a couple weeks later I developed my own GI distress and ended up in the ER with nausea so bad and abdominal pain that I begged for something (and I HATE meds).

The CT scan showed no real issues except some inflammation in the colon.  I went on to recover over 3 weeks, but then my daughter came to visit and there went my healthy routine.  Drinking too much iced coffee, eating out, etc.  By the time my niece joined us I was sick as a dog again just like what prompted the ER visit!  I had several additional guest visits planned but had to cancel them which I was so upset about.  I mean when can we just live our lives?!

So I guess what we are all agreeing on is that stress in any form is the trigger.  We can't cheat on our diets, especially if we have other stressful conditions going on.  I am disheartened by my lack of resilience that most other people enjoy.

Leann - I am sorry for your trauma.  I have read that we must resolve our trauma to truly heal.  I sincerely hope your therapist can help you accomplish this and that you can see the light on the other side.  We are only given this one life and we don't have say on which cards we are dealt, but toxic relationships must be eliminated from our lives.

GG - the mold thing can be very real.  When our immune system is on high alert there can be an underlying reason and mold is very often the cause.  Will you be having that tested?

Good to hear from you both - I am so lost on this new forum and can't seem to get my bearings.

Smooches and Cheers  

[[Be...]]

Hope you all feel better soon.  I feel like crap every single day.  

[[le...]]

Woke up this morning and so far feel completely different, not great but not gibberish wreak even managed have a shower and wash my hair.. This is such roller coaster just wish the good days would increase. Yes I don’t like the new forum miss the 12-24 group guess less groups makes it easier for them to manage. I don’t know much about mould would thought would affect your breathing, but worth getting it checked. I think stress plays a big part, not sure about the therapy she keeps asking about my childhood and I just can’t remember. Am on waiting list with NHS but could be Christmas before get any help. Sometimes feels like I imagine being bi polar is like constantly changing mood swings.

Edited September 8, 2023 by [le...]

[[De...]]

Becks - sorry you feel like crap...I know the feeling and it zaps the life force from us.

Leann - very happy to hear you are better today! Perhaps the emotional release is therapeutic.  

Maybe we can use this thread like the 12-24 one and keep in touch with each other.  Bless each of you!

[[Ga...]]

Hello all.  Well, I certainly have an interesting tidbit to share regarding my long lasting headaches!  At the suggestion of my wonderful internist, my husband and I hired a very reputable and highly rated mold and mediation company.  They have provided services to the The Smithsonian in Washington, D.C., hospitals, doctors offices, other health facilities and commercial properties.  The owner of the company spent an hour and a half in our home yesterday and checked for mold from the attic to the crawl space.  He found quite a bit of mold in our attic, some in the crawl space, and in some of our air vents.  This is not black mold but a more common type of mold, aspergillosis.  I shared with him my history of headaches, sinus issues, and allergy attacks.  My husband has also noticed an uptake in morning congestion, sneezing, and coughing.  I also mentioned that my symptoms either totally disappear or abate when I am out of the house…..gardening, eating out, or house sitting someone else’s home.  

So, we have decided to move forward and hire this company to do all that is needed to remove the mold, which is a multi-layered process, and also to install a powerful humidifier in our crawl space.  This company has been certified by the EPA and only uses green products!  The owner said I  have probably been breathing in the mold through the bedroom register which is close to my bed.  Will it solve my headaches?  I hope so, but even if this process does not work, at least my home will be fresher and cleaner!

Leann, glad you are getting a reprieve.  This at least allows you to take a breather from all your awful symptoms.  Continue to stay the course as you are definitely healing!!!

Becks, I know you have been suffering many, many years so there will be many of us applauding your healing!!!!  Are you still enjoying your candy kisses and Ovaltine??

Deanna, are your GI issues settling down a bit?  I pray so as you felt almost healed and ready to write a success story last May.   You, me and Decatur were all ready to write ours success stories last May, so we know first hand the euphoric feeling that comes when you see the light at the end of the tunnel.

WE ARE HEALING!!!!!

HUGS,

GG
 

 

Edited September 8, 2023 by [Ga...]
Change in line spacing

[[Bl...]]

bookmark/following

[[le...]]

Hope it works GG. Only got a days reprieve crap again today. Therapist is OK,, but what really need is some sort coping strategy to deal with the awful intrusive thoughts, which she doesn’t give me. Someone from NHS mental health team coming Monday so will try and push for help bit sooner. At moment literally get 1 day OK ish, then next day in tears again, never more than 1 day in a row that’s good. Am wondering if therapy making things worse, Hopefully sign of healing can’t go on like this. Has anyone else had rapid cycling symptoms wondering if it’s sign of healing. Hope the mould issue solves things x

Edited September 9, 2023 by [le...]

[[De...]]

Oh Wow GG!  I am really happy that you have found a possible solution for your headaches.  At the very least your body won't be working anymore to tolerate that mold and so you will have more healing energy going into the right place.  I've always felt that our environment puts our health at risk and the layers of insults to our body just keep piling up.

My GI issues are still with me, maybe just a tad bit better, but I really think I'm dealing with a histamine intolerance now.  I have been eating very healthy for the last two years and I give credit to that for my previous healing.  I now react to many many foods that were previously fine for me.  I'm keeping a journal and doing an elimination/low histamine diet.  Dr. appt is tomorrow.  I am eagerly awaiting a call back from the Functional Medicine group to take me on as a patient.  I am determined to get my like back (again), but I do think there might be a leaky gut, or SIBO at the root of all this.  

Leann, I'm sure therapy indeed stirs up so many emotions and I sometimes wonder if we must actually deal with our trauma, or is it just as productive to simply work on our coping skills.  At the beginning of all this mess (before I knew Ambien was my poison) I tried to dig deep and figure out what if any trauma was the root of my physical pain.  I never really found anything.  And there was a lot of emotion spent on it.  But in the end it was something I had to explore then move on.  

I wish I knew how to fix this for all of us.  The medical system is so flawed and so many people are suffering with few real answers.  Perhaps this is just the human condition.  I hope we all feel better very soon 

 

 

[[Be...]]

I've moved onto small Reese's pb cups, maybe 3 for an evening snack with my Ovaltine and milk. 

[[le...]]

10 hours ago, [[D...] said:

Oh Wow GG!  I am really happy that you have found a possible solution for your headaches.  At the very least your body won't be working anymore to tolerate that mold and so you will have more healing energy going into the right place.  I've always felt that our environment puts our health at risk and the layers of insults to our body just keep piling up.

My GI issues are still with me, maybe just a tad bit better, but I really think I'm dealing with a histamine intolerance now.  I have been eating very healthy for the last two years and I give credit to that for my previous healing.  I now react to many many foods that were previously fine for me.  I'm keeping a journal and doing an elimination/low histamine diet.  Dr. appt is tomorrow.  I am eagerly awaiting a call back from the Functional Medicine group to take me on as a patient.  I am determined to get my like back (again), but I do think there might be a leaky gut, or SIBO at the root of all this.  

Leann, I'm sure therapy indeed stirs up so many emotions and I sometimes wonder if we must actually deal with our trauma, or is it just as productive to simply work on our coping skills.  At the beginning of all this mess (before I knew Ambien was my poison) I tried to dig deep and figure out what if any trauma was the root of my physical pain.  I never really found anything.  And there was a lot of emotion spent on it.  But in the end it was something I had to explore then move on.  

I wish I knew how to fix this for all of us.  The medical system is so flawed and so many people are suffering with few real answers.  Perhaps this is just the human condition.  I hope we all feel better very soon 

Just don’t feel therapist going diwn right track, keep insisting to do with my childhood, which wasn’t the emotional abuse started when was much older. Had definitely triggered the OCD symptoms plus the the AD’s . Unbearable at moment but she doesn’t give me any coping strategies, will have 1 more session then call it day. Seeing someone from NH S today hoping can speed up waiting list with them. Just sit all day think might as well be in a nursing home, just need someone with right skills to help me.

[[De...]]

Yes Leann, we do.  We just can't do this all on our own.  So isolating. I see my GP today.  Trying to think how to explain all my weird symptoms to her.  Well we'll see.  

Good luck with your appt today Leann!

[[Ga...]]

Good luck Deanna and Leann with your respective appointments today, please let me know how they pan out!

Becks, I love those Reese’s pb cups, especially with milk👏🏻

Hugs,

GG

[[le...]]

Lady was really nice, giving me some coping strategies, going to see her every week. Sort of like OCD but different, think it’s stress induced by my family. Going try concentrate on doing 1 thing each week to overcome the thoughts. Still long wait for psychotherapy but least someone finally trying to help. Good luck Deanna, I got told by my surgery I was beyond their capabilities even though they caused this.

[[De...]]

Leann glad you have a path forward.  I hope you find some good strategies to help you.

My Dr. had very little input as to my new GI issues.  She said to just keep doing what I'm doing with diet and now waiting for the GI consult.  

I asked her for a consult for counseling since this new hiccup has brought up a lot of old issues while I was recovering, like PTSD that I'm back to all my old suffering.  She had NO ONE to refer me to.  Said there is a mental health crisis following COVID and not enough therapists.  

[[le...]]

Can you go privately. There is 16 week waiting list on NHS fir therapy I’m on list, have been having private therapy, she has helped but but not with intrusive thoughts so stopping. Mental health bottom list here. Have just started try on line course called the serenity academy I’ll update if it helps, wasn’t expensive. Feeling really low don’t even want get up today, contantly swinging from awful to just about functioning.

[[De...]]

I am so sorry Leann - After all you've gone through it really is no wonder you are feeling downtrodden.  I must say you really do keep on trying so please know that I think you are a soldier, a fighter.  Please don't give up.

You will find the answer.  Have you ever researched nutritional psychiatry? There is a growing belief out there that some psychological issues, even OCD, is connected to nutritional deficiencies and gut health.

 

[[le...]]

I just keep hoping this sudden swinging between coping and meltdowns is a sign brain is repairing. I didn’t eat properly for months lost lot weight. I am eating properly now so as seems gut and nervous system connected hopefully help. It’s not really OCD more like extreme anxiety. Just trying keep going, made myself go to supermarket every day with husband this week. Too easy to hide away at home!

[[Ga...]]

I am hearing some good things from you, Leann!   Little by little you are showing some signs of healing…going to the supermarket with your hubby is a big step!!!!   I am sure he feels good seeing that you are able to get up and get out with him.

I saw a recent Josef Witt-Doerring YouTube video where he addresses disruptive and intrusive thoughts.  Maybe check it out!

Now eat healthy, hug yourself and your hubby, and know that you are seeing some true healing going on🎉🌹😜

P.S.    I bet your jeans fit you to a tee!!!

GG

Edited September 17, 2023 by [Ga...]
Put on by mistake!