eboyd: years in the making

[eboyd]

I was 22 when I went to the doctor because of a broken heart.  He put me on effexor.  I had faith in our medical system then, I don't these days.  He did not even think the birth control I was on was causing a problem nor did he test for any nutrient insufficiency.  It was a brief few minutes.  I was crying over a break up and that was all he needed to see and hear to pack me up with several trial boxes full of effexor XR.  It seemed like the end of the world and I wanted the pain to stop so I put my trust in my doctor and took the pill everyday until I got pregnant a year later. 

 

It was a difficult pregnancy.  I was not aware I had a genetic mutation in my MTHFR pathway.  I don't even know if that pathway was studied much back then...I am 38 now.  Just so you have a time line.  I don't know if they were aware that antidepressants made the lack of folate worse.  No wonder I had preeclampsia and was on bed rest for the entire 3rd trimester.  I felt like crap and was at risk for heart attack and stroke.  They had to induce 2 weeks early.  She was definitely worth it.  Her father, however was not. 

 

I needed to go back on effexor after the pregnancy to deal with his abuse.  In the end, I wound up with PTSD and he sat 6 years in prison.  I had developed a drinking problem at this time.  I was out of control.  The second pregnancy helped me reel it back in.  I went off the meds and did not go back on them until I was unable to handle the stress anymore which was about 2 years post partum.  I had 2 daughters, I was working as much as possible and in school full time.  My significant other was trying to "hook up" with other girls and my second attempt at a family was failing.  They added trazadone this time so I could sleep. 

 

Instead of dealing with the problem, I numbed it.  My behavior changed a lot.  I lost interest in the things I was working so hard for, I became compulsive even more than usual, the alcohol abuse returned.  The failing of the family sealed everything.  I lost it completely, cut myself so badly and tried to commit suicide.  I ended up spending a week in the psych ward where they changed up my meds and added abilify and buspar to the cocktail.  Apparently I had gone from just depressed to bipolar. 

 

I got off the medication after I found myself pregnant for the 3rd time.  I married this one.  Love him to death too.  After I had my 3rd daughter and even during the pregnancy I was having what I thought were a return of my old bipolar symptoms.  I went back on all the meds believing they would help me.  They actually made me lose control a bit more and eventually I felt so lost and sick that I knew it was time to get off the meds and actually work towards a happy, healthy life.  I was weaned off everything except trazadone.  I requested to stay on it for insomnia.  I had not been able to sleep for years without a sleep aid and it worked for me. 

 

The initial withdrawl was bad.  I was on the couch for atleast a month after taking my last dose.  I made it through.  Shortly after I began developing gastrointestinal issues.  I was always nauseated and would have stomach aches.  No one thought it was from withdrawl or from the trazadone I continued to take.  I carried on in my health quest.  I began running and cleaned up my diet.  I fell in love with Crossfit and added that to the mix.  My gastrointestinal problems continued and got worse.  I started eliminating gluten and dairy from my diet.  It helped a little. 

 

Then I woke up one morning with distorted vision, extreme fatigue, and a general feeling like I had the flu...but it wouldn't go away.  I worked with a gastro thinking that something horrible was going on in my intestinal track.  Blood work, a colonoscopy, ct scans, numerous emergency visits could not pin point anything wrong.  It was a mystery.  I thought I was dying at one point.  Until I decided it was time to go off of trazadone...and miraculously after I was weaned off all the brain fog, headaches, fatigue went away.  My gut did not improve much.  But I then had an idea what was causing my issues. 

 

I was diagnosed with IBS and it was driving me nuts.  I was not aware I was still going through withdrawls nor did I associate the deterioration in my mental state with those withdrawls.  I thought, my gut was great when I was on effexor.  Lets try it.  My body rejected it twice.  My gastro tried a low dose of elivil which my body also rejected.  I worked out that weekend and woke up on Monday and all the symptoms I had before had returned times 10.  I felt like I had fried my brain.  I have been trying to recover for the past 6 months. 

 

I did see a lot of improvement after working with an integrative doctor.  We are trying to increase my serotonin, dopamine, and norepinephrine.  My adrenals are shot.  My cortisol curve is really messed up.  The ability for my body to regulate blood sugar levels was horrible for a long time.  But is better now.  I can have coffee again in the morning when I need it most.  I sleep more than I don't these days.  Sleep hypnosis works like a charm to help with the racing thoughts at night. 

 

My gut has improved, but my diet is super clean and I try and exercise when I am feeling well enough to.  I take methylfolate for my mutation and we are working on getting my body to synthesize B6 better with a ful spectrum of aminos I take as a bone broth protein supplement. 

 

I still have waves.  They were manageable up until this week.  I am having a really bad wave.  Migraine, my thermostat is not working right (either freezing or sweating), muscle aches, horrible vertigo, vision problems, balance is off, muscle weakness, fatigue yet cannot sleep well.  And the emotional roller coaster has not been fun.  I can't wait to get off that ride.  Horrible panic, paranoia, fear, anxiety, akathisia, and obsessive behavior, cannot handle any type of stress at all.  My poor 13 year old got the brunt of it yesterday.  I yelled at her because she needed me to pick her up from school because she was not feeling well.  I could not handle the change in my morning plans.  I apologized later that night, though.  I do try and explain what is happening.  This is what it is like, though. 

 

I know this is a lengthy post, but I feel it is important to tell my story and I am not going to sugar coat things at all.  This whole process has been horrible.  It is a nightmare for me and for my family.  I just have faith and hope that one day I will wake up and I will be healed...atleast I hear that is how things are suppose to happen.  

Edited February 21, 2019 by Altostrata
added line breaks

[ChessieCat]

Hi eboyd and welcome to SA,

 

I've moved the topic about sleep to an existing topic on the same subject which you can find here:  tips-to-help-sleep-so-many-of-us-have-that-awful-withdrawal-insomnia

 

[Altostrata]

Welcome, eboyd.

 

In the sleep topic, you mentioned you still have sleep issues. What is your sleep pattern?

 

Did you ever go on an exclusion diet for your gastro issues?

[eboyd]

My sleep pattern is not the greatest.  I usually go to bed about 11pm.  I get home from work at 10pm.  I wake up at 3:45am to take my husband to his carpool and then am back in bed by 4:10am.  I get up by 8am for the day.  

 

As for my diet, I follow paleo in the form of restrictiveness.  The high fat content does not sit well on my stomach, however.  Removing grains, dairy, legumes, and all processed foods made a huge difference.  I have been tested for food sensitivities recently and have none, but the synthetic folic acid in flour and a lot of processed foods is something my body can't breakdown and will build up and become toxic.  It hits hard and fast and exacerbates symptoms.  I almost passed out after eating a french dip sandwich before I understood what all was happening.  My gastro problems definitlely correlate with the waves.  It is all linked together.  

[Altostrata]

Are you able to sleep 4:10 a.m. to 8 a.m.? It might be better for you if you did not need to interrupt your sleep, can you work that out with your husband?

 

Do you have a homozygous or heterozygous MTHFR mutation?

 

If you don't do well with high fat, perhaps paleo is not the correct diet for you. In the US, you cannot get testing for food intolerance, only allergies. Food intolerance is not the same as a food allergy.

 

It could be you have intolerances to specific foods and all you need to do is avoid those. Please see

 

Elimination or exclusion diets for reactions to food (food intolerance) 

 

Histamine intolerance

 

Aside from the gasto issues, what symptoms do you attribute to going off psychiatric drugs?

[eboyd]

We only have one vehicle right now so there is no way around getting interrupted sleep.  We also live in a rural area so we don't have access to public transportation.  Believe me, I have researched every option there.

 

I have a homozygous mutation.  

 

I only follow the restrictiveness of paleo such as no grains, dairy, legumes, and eat nonprocessed foods.  I tweaked my macros to what work for my body.  I eat mostly chicken and eggs for my protein sources.  I had to deal with the higher fat lower carb at the beginning of the withdrawls because of the inability to regulate my blood sugar.  That has improved though.  As for food sensitivity testing, the company I work for does offer the labwork for that.  I am a personal trainer at a pretty prestigious fitness club.  We offer lab work my general practitioner could not. It is pretty interesting to see what exactly your body does not like and does.  I do want to clarify, my intergrative doctor did run a very extensive amount of labs which concluded my body is completely messed up.

 

I tested low for histamine as well.  I am not sure how that effects things.  I cannot find research on low histamine only histamine intolerance and too much of it.  My doctor has explained that it is because I am not converting B6.  That didn't really calrify things for me.

 

Symptoms of going off psych meds included insomnia.  I couldn't sleep for months, racing thoughts, my brain would overload from too much stimuli, migraines, brain fog, memory loss, inability to focus, but that has improved, inability to handle any stress including exercise which has also improved, horrible vertigo, muscle weakness, loss of coordination, panic attacks, akathisia, horrible fatigue, anxiety, spikes in blood sugar when I ate, disrealization (still have it) body aches and pains and symptoms would increase during my cycle.  It puts me into a wave every time. Symptoms were really bad in the beginning.  There were days I wished I wouldn't wake up.  I am getting better, though.  I have seen huge improvements.

 

I did not sleep well last night.  It was hard to fall asleep and I kept waking up to bouts of akathisia.  I am feeling pretty hopeless today and angry that this has happened.  It is taking a huge toll on my husband.  I have not been out of bed much since Saturday.  Will I ever have my life back?

[ChessieCat]

the-importance-of-mthfr-methylation-b-vitamins-eat-leafy-green-veggies

 

genetic-testing-personalized-medicine-liver-enzymes-genotypes-genesightrx-genomind-etc

 

folic-acid-folate-l-methylfolate-and-deplin-vitamin-b9

[eboyd]

I already make sure to get lots of leafy greens and I take 5MTHF daily as directed.  

 

I was not aware there was a pharmacuetical out there that was prescribed for people with the mutation.  Synthetic folic acid is toxic to people like me.  It builds up and we can't break it down.  It would be great if they would stop meddling with our nutrients and stop trying to pump everyone full of crap.  

[ChessieCat]

I am not familiar with this.  I was just providing the links to information we have on the site.

[eboyd]

Just a quick update.  I began HRT for extremely low testosterone and low estrogen 3 weeks ago.  It definitely has helped with mood stabilization especially during my cycle.  I did not get severely moody or feel rage like I usually do around this time.  The crying spells have improved.  I still went into a wave.  It has been 6 days since going into it and I hope to come out of it soon.  Lots of pressure in my head, confusion, loss of appetite, weakness, vertigo, disrealization, and a little bit of akathisia when I sleep.  I usually wake up with that shaking feeling during waves.  It has not been as bad this wave as it has been in waves past.  Atleast I did not experience muscle pains and strains this time around.  I attribute that to the curcumin, fish oil, and CBD oil I have been using too.  Libido is starting to come back, but I am too exhausted to take advantage of it.  On the plus side, I only missed 2 days of work this month instead of the usual almost 2 weeks.  May is a win in my book.  I am hoping to see inprovements continue over the course of the summer.

[eboyd]

I need some advice.  I have been working with an integrative doctor and she has been awesome.  However, I have waves that last for about 2 weeks whenever I start my period.  I decided to go on leave from work since it has been far too stressful to try and work around these flare ups.  My doctor did extensive testing.  I have normal cortisol in the morning and then it spikes super high in the afternoon, but drops back down to the normal range at night.  She had me on Dr. Wilson's adrenal repair and support for that.  My testosterone is pretty much nonexistent and my estrogen was low.  I am now on bioavailable testosterone replacement therapy.  She also had me taking COQ10 since that tested low and 10,000 ui of D3 and 45mcg K2.  Due to the cut in pay while off, keeping up with the cost of the supplements is difficult.  Since stopping the D3 and K2 and the COQ10 and tapering down the adrenal supplements, my moods have been horrible.  I am so stressed out and completely moody all the time.  My digestion has gotten worse.  I was starting to have normal bowel sounds.  My stomach was beginning to growl like a normal stomach when I was hungry.  It is back to gurgling and being bloated all the time.  I forgot to mention I also take 2,000mg 5-MTHF for a genetic mutation.  I am not sure if all the supplements were making my flare ups worse or not, but they sure as hell were making my windows a lot brighter.  Should I wait it out or should I go back on the supplement regimen my doctor laid out for me?  I am getting really tired of losing my **** over the smallest thing.  I know it is not good for my body to be in that constant state either.  Any advice would be appreciated.

[Altostrata]

Hello, eboyd.

 

In general, we have not found the sorts of tests integrative doctors might order, such as cortisol level, to be at all useful for tapering or withdrawal syndrome.

 

I cannot comment on the treatment you're getting from the integrative doctor, I don't know anything about it, especially the hormonal treatments, about which I'd be very wary.

 

Taking supplemental hormones can also greatly affect your mood. If you added hormones while dropping the other supplements, your mood change could be due to that.

 

Were the supplements you were buying special, expensive supplements? If so, you can replace them with the less expensive, less fancy kind. There's rarely any difference, just different labels.

 

How are your issues related to tapering or withdrawal syndrome?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

[eboyd]

I was having digestive and mood issues which were related to trazadone which I had chosen to stay on for about 2 years after coming off of buspar, effexor, and abilify.  I started to have bad side effects which were not attributed to the medications, but to my gut since I had been dealing with nausea and stomach pains which began shortly after I came off all the other meds.  I had an endoscope done and a colonoscopy along with several other tests which all came back negative.  I had bad brain fog and it felt like I had the flu intermittenly.  After the colonoscopy, my gastro told me whatever was causing the problem, it was not gut related.  The next step was to come off of trazadone.  Which I did.  Mind you all tapers were done under a doctor's supervision...and knowing what I know now was too quick.  My moodiness was horrible and my gut suffered even more, although the flu feeling and brain fog went away.  I had gotten different opions and in the end we tried to reinstate the effexor...that did not go very well.  I had to stop taking it because it made me sick and then I was hit with the worst onslaught of withdrawl ever.  I am still dealing with symptoms, but the supplements were helping to stabilize my moods as well as improve my gut issues.  I still have bad waves during my period which leave me bed ridden and my doctor thought that adjusting hormonal levels would help, so she added that to the list of deficiencies she was trying to correct.  As of right now, I am not feeling great.  I am flying off the handle over everything, I am fatigued, and I want to divorce my husband who has been by my side through this...so I am being irrational and dealing with impulsiveness.  I have been trying to remain calm and relaxed, but it is not going well.  I know this is just part of the fluctuations we deal with.  But I can't help but think I was better off with the supplements.  I don't know.  I just want to get better.  The supplements aren't too bad price wise, there is just a good deal of them so they do add up.  I use the pharmaceutical grade and a lot of them are blends which were recommended by my doctor.  Just feeling lost right now and like everything I worked for or love in my life is being torn away from because of this and it is getting very tiring and discouraging.  I feel like I was stabilizing at least for half the month and now I feel worse being off the supplements.

[ChessieCat]

If you decide to reintroduce the supplements, I suggest that you introduce them one at a time, at a lower dose than you were on.  That way you might have a better idea of what worked and also you might not need to take as much as you had been taking.  This might save you some money.

 

Keep it Simple, Slow and Stable

[eboyd]

I took your advice and it seems that the adrenal supplements are too much for me.  I feel way too amped up and I really don't like it.  I ran out completely and didn't feel horrible off of them.  I did go in to a small wave, but I stabilized pretty quickly.  I did get anxiety at the same time in the evening off of them, though.  The cold showers seem to help and the 5htp and magnesium at night helps to calm me down with the evening anxiety.  I have also found that the 5htp fixes my gut issues pretty well on its own.  I am currently taking the vitamin D, COQ10, and 5MTHF.  It seems to work pretty well.  I will stick with that and see how it goes.  I may reduce the vitamin D since summer or is suppose to be here and I should be getting more sun.

[ChessieCat]

6 hours ago, eboyd said:

I am currently taking the vitamin D,

 

This is a daytime vitamin so should be taken in the morning, if you aren't doing that.

[eboyd]

Yes.  I take Vitamin D in the morning with the COQ10, and 5MTHF.  5HTP and magnesium in the evening.

[Tweet]

Eboyd, 

How are you doing these days?

Hope you’re having lots of windows!🙂

 

[eboyd]

COQ10 is suppose to help with focus.  I teas]ed low so my doctor wanted me to supplement with it.  The 5MTHF is a folate supplement.  I have a genetic mutation in my MTHFR pathway.  This pathway is a methylation pathway and is responisble for making nuerotransmitters.  By taking folate, my body is able to make the nuerotransmitters as it should.  It is probably a big reason why I was on antidepressants in the first place.

[Tweet]

Does the coQ10 help? I have a horrible time focusing. My husband has to literally figure things out for me sometimes. Then I get so discouraged! it triggers my anxiety when I have too many things to think about at once 

[eboyd]

Whether or not it is from the COQ10 I cannot say for sure, but I am able to focus and think much better.  It use to be hard to have conversations because I never could think of the words.  You can always try it.  If it works well for uou then keep at it, if not then uou can always stop taking it.

[ChessieCat]

You new topic has been merged with an existing topic:  cipro-levaquin-azithromycin-z-pack-and-other-antibiotics

 

[Tweet]

Ok I am going to try it! 

Thanks so much. 

I'm sure part of the scatterbrained Ness is paws, but I really feel I need to do something to help it along. 

How are your symptoms?

I hope you are having a lot of better days, eboyd.

 

[ChessieCat]

11 hours ago, eboyd said:

COQ10

 

1 hour ago, Tweet said:

Ok I am going to try it! 

 

@Tweet

 

Only make one change at a time.  When I took CoQ10 my aches and pains increased.

[Tweet]

Will do.

[eboyd]

Hi Tweet.  I am doing okay.  I am battling a bad ear infection right now.  Other than that, my waves have not been horrible and they have not been lasting more than a day...which is really nice.  I am hoping things continue to go well.  How has everything been with you?

[eboyd]

Topic title:  Waking up Shaking

 

I am worried I have mild seizures in my sleep during waves.  I have had a burning sensation in my brain for the past two weeks.  I have had the same feeling at the beginning of withdrawl constantly.  Now it is just during bad waves.  I also have insomnia really bad during this time where it is really hard to fall asleep.  When I do it is for short periods of time and I wake up shaking.  Not sure what to make of it.  Has this been something others have dealt with?  Should I see a nuerologist?  I am not going to take any medications they prescribe so it just might be a waste of time and money.  

 

Edited August 2, 2019 by ChessieCat
added topic title

[ChessieCat]

Sleep problems - that awful withdrawal insomnia

 

waking-with-panic-or-anxiety-managing-the-morning-cortisol-spike

 

tremors-shaking-body-vibration-internal-trembling

 

burning-skin-burning-feet

 

paresthesia-pins-needles-numbness-tingling-burning-sensations-aka-neuropathy

 

[eboyd]

Thank you ChessieCat.  It is nice to know I am not the only one who experiences this.  I appreciate the links.

[ChessieCat]

Please create your drug signature using the following format.   Keep it simple.  NO diagnoses or symptoms please - thank you.

• details for last 2 years - dates, ALL drugs, doses
• summary for older than 2 years - just years and drug/s

Account Settings – Create or Edit a signature

[ChessieCat]

Here's another link:  hypnic-hypnagogic-jerks-when-falling-asleep

 

[eboyd]

Just a quick update.  Bad waves seem to hit about every other month.  I have been down for a week now.  Really bad migraine, super tired, freezing or hot, nauseated, vertigo...the usual suspects.  The good thing is my mood isn't really all over the place.  My patience isn't the greatest, but I don't think anyone who feels unwell has good patience.  The last time I was in a bad wave was the second week of July.  It last about 2 weeks, but then I have a decent 3-4weeks.  I will take it.  I am in the process of experimenting with a HRV/RHR/Sleep/stress monitoring device.  I am curious how things change as I cycle through waves and windows.  One thing is for certain, activities I thought weren't that strenuous on me turn out to be more than what my body can handle.  I chose to purchase the monitoring device when I noticed during cardio training that I did not feel as though the exercise was very intense, but my HR said otherwise.  The thought here is if I can manage the amount of stress and monitor accordingly from day to day then maybe I can help myself recover.  And I really can't rely on how I feel because that is a horrible indicator for me.  The activity is usually done and its too late.  

[ChessieCat]

exercise-do-more-do-less-do-nothing-what-worked-for-you

 

[Tweet]

Hi eboyd. Mostly emotional, psycho, and anxiety symptoms now. It is scary how wrong my thinking can get. Guess that's good because it is so scary I really focus hard on thinking and behaving "normally". 

 

[eboyd]

So, doc told me to go back on Sam-e.  I have been taking it for 2 weeks and I don't think it is something I should be taking.  How should I come off of this?  It is in a packet.  I think that just the Vit. D, 5mthf, COQ10, 5htp, magnesium, and CBD should be good.  I have had a horrible migraine for almost a week now and very nauseated.  Pretty sure its the Sam-e.  My COQ10 tested high too.  Doc dropped me down to 200mg.  Should I try and come off of most of this stuff?  Is it hindering progress?  My bloodwork is coming back normal now.  How am I suppose to be able to make enough serotonin on my own if I keep supplementing with it?  You know?  5mthf and magnesium will stay no matter what.  My vit. D is on the lower end of normal and I am on 10,000iu.  Its trial and error and I wonder if the error is not in letting my body do its thing.  I am a huge lover of exercise and I know that increases serotonin on its own.  However, I am able to hit all areas of sleep with the 5htp and actually get a decent nights rest a lot more often along with my gut not being such an irritable mess.  This is so confusing.  Maybe the best thing to do is nothing at all.  

[eboyd]

@Tweet so glad to hear the physical stuff is going away!  I am so happy for you.  That mental stuff is the worst, though.  I try and remind myself that it is just withdrawl and this too shall pass.  I have found breathing and cold therapy very useful.  Love Wim Hoffs method.  It chills me out when I am losing it...literally.  Lol.  Can I ask, are you taking any supplements to help you out?