☼ OffEFFexor: hello everybody

[Altostrata]

OffE, how are you doing?

[OffEFFexor]

Alto, thanks for asking.  I'm doing great.  I feel so good I am embarrassed to post, when so many others are suffering.  I am really lucky to finally have relief from this horrible withdrawal.

 

The CES device has worked wonderfully.  I have to give it the credit because I had drastic relief just four days after I started using it, and I continued to improve over the next two weeks.  June 11th when I started using the device, I was sleeping one or two hours a night, crying most of the day, feeling deeply depressed, barely able to get through the days that I work.  June 15 I awoke having slept six hours straight.  The following week only one day did I feel like crying and most nights I slept well. 

 

Now, just three and a half weeks after starting the CES, I'm returning to normal life.  The normal stresses of work, paying bills, shopping, no longer feel stressful.  I'm going out with friends, taking care of bookkeeping and tax issues that have lingered for nearly a year, applied for a new job.  Like I woke up after nine months of a coma. 

 

I'm a little depressed today, with a little tinnitus and headache.  What is now a 'bad' day would've been a great day a couple of months ago.  Most nights I sleep well, like six out of seven, I have good energy and a clear head most of the time, and maybe a little bit of symptoms, at the most 20% of the intensity of just a few weeks ago, and not lasting more than a few hours.  I'm not all the way well, but this has been a drastic turnaround. 

 

A few weeks back my symptoms shifted; most of what I felt for the previous months of withdrawal, tinnitus, brain fog, headache and low energy lifted, almost completely.  But in their place, bad insomnia, deep depression with crying most of the day took hold.  The insomnia and depression have now gone away, while the older symptoms got a little worse during the time I've used the CES.  Which is weird. 

 

I have to wonder if the CES would've helped had I used it earlier.  Somehow I have the sense that several months of time were necessary for my brain to go through the withdrawal process, regardless of any electrical pulses being sent through my head.  I'll never know, this whole thing is such a mystery.

 

I also wonder if the symptoms might return with a vengeance, I'm not counting my chickens prematurely.  Gonna continue to take the best care of myself that I can, and hope rather than expect that the worst is behind me. Another few weeks like this, and I'll be a candidate for a 'here comes the sun' icon!

 

I also hope this CES device is tried for other people going through the hell of AD WD, and that other people can get similar relief.

[LoveandLight]

Oh so pleased for you!

[OffEFFexor]

The CES is helping a lot, but I am not cured.  I've had a wave of symptoms for about a week now, after three weeks of feeling great I was rudely reminded I am still in withdrawal.  Headache, tinnitus, brain fog and fatigue, but much much less intensity than in the past.  Insomnia and depression have stayed away.

 

These milder symptoms are tolerable, so much less severe than what I've been through, but it still sucks.  I enjoyed a three-week window, I hope this wave is short-lived.  Still doing the CES three times a day.

[bluebalu86]

OffE,

 

when you use the CES, do you wet your hair or just the sponges? Do you change the sponges after 2 weeks like it says in the manual? Do you use it at level 2? Have you tried levels 3 and 4?

 

I find the FW difficult to use. I wet my hair two times a day and there's water dripping everywhere - from my hair and from the sponges. I'm starting to think I should've gotten the Alpha-Stim instead of the Fisher Wallace because the AS uses earclips and is not as messy. 

 

I didn't know I have to replace the sponges. If I knew that, I would've purchase an additional pack with my original purchase. Now I will have to purchase additional sponges, they are not that expensive but I have to pay 100 dollars for shipping and go through hell at the customs to be able to import them. This is so frustrating!

[OffEFFexor]

I place the pads in front of the hairline, on bare skin.  The video describes putting them 'underneath the hair' which would mean pretty low on the side of the face, down in front of the ears.  I have tried it partially over the hair (my hair is short); I think the hair needs to be moist, but not dripping wet.

 

When there isn't good contact between skin and pad, I feel a little electric shock.  I readjust, and then I feel nothing.

 

After two weeks I noticed the sponges getting dirty, and I did change them.  I thought of washing the used ones, or replacing them with cheaper sponges from a store and cutting them to size.  I would definitely do that if I were in your situation overseas. 

 

My doctor was conservative in how he suggested I use the device, compared to the instructions the company provides.  He started me on setting one, five minutes, twice a day.  Within ten days I had increased to setting two, twenty minutes, three times a day.  He also suggested I use setting one at bedtime, but I usually use setting two.

 

He is concerned with the treatment causing too much 'activation' - an akatheisa like reaction.  I have had a bit of activation, the feeling of my brain going a bit fast, the kind of symptom Skylarblue describes as having both a TV and a radio playing at the same time.  I've had that kind of symptom in WD, and I'm getting it a bit now in my current wave, but I'm not sure I can blame the CES for that, as it was absent for the first three weeks of CES use.

 

He suggested I stay at two, since I'd been doing well.  I don't know if he will suggest going up since I'm having some WD syptoms now. 

 

I hope after a bit more time you are able to get some effect from the CES.  I think I was lucky to get such a quick response.

[bluebalu86]

Thank you dear

[OffEFFexor]

I think for me the CES has been a two-edged sword.  I think it has definitely helped relieve some severe symptoms of WD; but it might be causing me some problems as well.

 

As I've said, after five days I experienced dramatic relief from the insomnia and depression I was suffering.  For about three weeks I felt really healthy, most of those days I was nearly symptom free.  Then, over the last week I had a return of the headache, tinnitus, brain fog and fatigue, the symptoms that predominated over the now ten month ordeal.  Although, this wave was much less severe than at any time over these ten months.

 

In addition to those symptoms, I also felt a bit over-activated, a kind of consistent racing of thoughts, feeling of hyperness, an akathesia type of feeling, (without specific tingling or twitching movements of my limbs.) 

 

Overall on Monday I felt pretty crappy. I decided to stop using the CES for a day.  Felt crappier on Tuesday, so I didn't use the CES for a second day.  Two days, 48 hours of no CES (after using it 3X daily, 20 minutes each session for a little over a month.)  This morning, I woke up feeling much better, the overactivated, akathesia feeling was gone.  The other symptoms were gone.  I felt like the wave had subsided, and I was back in a window.

 

So, I decided to go back to the CES.  And, within an hour of using it, some of the symptoms returned, the headache/tinnitus/brain fog.  Mildly, not too intense, but definitely back.  The overactivated, racing thoughts/akathesia symptoms did not come back.

 

Weird.

 

I have the sense that the CES absolutely helped relieve my WD symptoms.  But I also have a suspicion that maybe too much of it causes some of those symptoms to recur.  I realize some or all of what I am experiencing may be completely coincidental to using the CES.  I really have no damn idea.  Because of course there are other variables; work schedule, stress and lack of stress from day to day, diet variations, who knows?

 

I feel guilty because the good news, even the recent bad days pale in severity of my bad days as recent as last month; I am overall doing much better and having many outstandingly normal days, while so many of you folks are suffering profoundly.  I am elated to not be as horribly sick as I was day after day, week after week over most of the last year.  Overall I am so much better

 

But I do want to provide a full account of my CES experience, so other people using it or contemplating trying it can have that information.  I wish there were an objective way to measure the effects (if any.)

 

My best guess right now is that there is a sweet spot of using it, just enough but not too much, to help me move toward health.  I'll try using it again maybe tomorrow or the next day and see what happens.  Maybe using it for three weeks then quitting would've been ideal. Maybe using it at a lower setting, only twice a day is best.  Maybe setting it aside until a wave really hits hard is the way to use it.  We'll see.

 

 

[neilstevenlubin]

 

OffEFFexor,  thanks for posting your experiences. I hope things get better soon. I'm trying to get the Alpha-Stim AID as we speak. I hope I have success too.

 

[bluebalu86]

OffE,

 

I stopped using the FW because it made me feel like I've had 15 coffees and some of my symptoms increased this week, so I feel it made me worse, not better. Haven't used it since Tuesday. Maybe I'll try it again if/when I feel more stable. Right now I dare not experiment anymore.

[neilstevenlubin]

Hi bluebalu86. Sorry things have been so tough for you. Feel better soon.

[OffEFFexor]

I used the CES device for about a month, and I experienced tremendous relief of my WD symptoms.  But, I had some symptoms return, and I had the sense that the CES was causing some of the symptoms, activation/racing thoughts/hyper-ness.  I tried skipping a couple of days, then using the CES a couple of days.  I seemed to do better not using the CES, so I put the CES down for about a week to see what would happen.

 

I was doing OK, mild but tolerable symptoms.  I went back to the gym for the first time in months, and did a light workout.  Since then (Friday), that feeling of activation/racing thoughts/hyper-ness has been with me.  My sleep has been ok, but this activation feeling, along with worsening tinnitus and headache made the last two days pretty rough.  A little tiny bit of depressed feeling has crept in too.

 

I think I am just in a wave, the exercise may have made it a little worse.  I don't know if the waves/windows are completely independent of my using the CES device, I don't know if the exercise made things worse.  I'm completely confused as to where cause/effect lie.  But overall, these two bad days have been mild compared to the way I was last month or anytime in the prior nine or ten months.  They are bad only compared to the very normal way I have felt most of the past few weeks.  It just seems so odd after feeling so normal and healthy for most days in the past six weeks. 

 

These ups and downs are typical of my whole journey since prolonged delayed WD set in last September.  I am grateful that the downs are so much milder than before.  I'm going to try the CES device again, at lower doses, and see if it correlates with feeling better.  

 

A brief summary of the past couple of months: 

 

Today is sixteen months after cold turkey cessation of Effexor, and ten months from onset of delayed prolonged withdrawal.

 

In April-May, my predominant symptoms of headache, tinnitus, brain fog and low energy all gradually diminished, and were replaced with insomnia, deep depression and frequent crying.

 

On June 11th I started using the fisherwallace.com CES device.  I began at five minutes once a day, on setting one, and quickly increased to three times a day, twenty minutes each, on setting two.

 

Five days after starting the CES, I slept for six hours straight; the insomnia pretty much resolved, maybe three bad nights in the six weeks since.  Within a week the depression and crying were gone.  However, the prior symptoms of headache, tinnitus brain fog and low energy slowly reappeared, on and off.

 

In addition, this feeling of activation/racing thoughts/hyper-ness, which I associate with my understanding of akathesia, began to bother me on and off.  The CES seemed to be associated with this feeling; I skipped a couple of days using the CES and this symptom was relieved.  But I stopped using the CES, and despite putting it away this symptom returned more persistently, maybe in association with exercise.

 

So, I'm going to try the CES again, twice a day for ten minutes, at setting one, and see what happens.

 

But overall, I'm doing OK.  Working three days a week, more active socially and otherwise, having many more good days than bad.  And the bad are not horrible.

[neilstevenlubin]

OffEFFexor,  thanks for posting your experiences. I hope things get better soon. I'm trying to get the Alpha-Stim AID as we speak. I hope I have success too.

Hi everyone. OffEFFexor, I'm glad that the CES unit has been helping. Sorry you're still having WD symptoms. I was finally able to order the Alpha-Stim AID unit and will have delivery of it tomorrow. I'm hopeful yet a bit scared that it may not help, but the hopefulness side is winning out right now. I'll keep you all updated with how it goes treating my depression, insomnia and anxiety. Bye for know.

[OffEFFexor]

I last posted about three weeks ago.  I am now 17 months since stopping effexor more or less cold turkey, and 11 months since the onset of severe, delayed, protracted withdrawal syndrome. 

 

I am still sick, but I'm doing pretty well.  I have healed tremendously from the depths of this illness, and I feel much better than even two months ago.  Symptoms of headache, tinnitus, fatigue, occasional depressed mood, and about once a week insomnia are still a problem; I still have some healing to do.  But the worst of my symptoms are now maybe 10-15% of the peak severity.  There were plenty of times in the winter, spring and early summer that I had lost hope, and thought healing to the extent that I now have healed was impossible. 

 

I stopped the CES device for about three weeks.  I had used it for about a month, and I had tremendous relief of insomnia and depressed mood, but I stopped because it seemed to be associated with some activation/hyperness.  This symptom, like all the rest, seems to come and go on its own schedule; I've had a couple of waves in the past few weeks, two or three days at a time.  Shorter, milder waves, longer windows.

 

I restarted the CES two days ago, using it only once a day, ten minutes, at setting 2 (out of 4).  I am hoping it might smooth out my sleep a bit.  I am hoping a lower dose will be optimal. 

[Fresh]

I'm delighted that you got the same level of relief as I did OffEffexor.   It doesn't make everything perfect , but definitely tolerable.

 

I've been doing a booster course and again am having a quick response.    

I did have a bad episode of seriously itchy toes every night for about 2 months after 2 glasses of wine in May.  Each night around one hour after taking my meds I had dose-dumping and my toes blew up.  The CES therapy did not protect me from that.   But my sleep and mood are great , so everything becomes easier and more pleasurable.

 

What type of settings do you have to choose from?    The Sota Biotuner has 2 at the Schumann resonance , which is neutral , 2 for relaxation

and 2 for stimulation.  It's recommended to vary the sessions to stimulate different parts of the brain.

Does yours have something similar?

[OffEFFexor]

Mine just has a dial, and four lights.  The more you turn the dial, the more lights illuminate.  The Fisher Wallace machine puts out an alternating current at three different frequencies; the dial only changes the amperage I think.

 

I have absolutely no clue as to how it works, or which parts of the brain it is affecting.

 

I think the CES has been a big part of my overall improvement in the last two months, but the biggest factor is time.  I really do not know if I would feel just as good w/o having used the CES, but my gut feeling is that it accelerated the recovery/healing process.

[Cdav]

OffEFFexor, I just caught up with your thread. 

 

I'm so happy for you that the CES has been helping so much in your recovery! I didn't have much luck with it, though I also tried it. 

 

Effexor is such a horrible and difficult drug to come off. For me Effexor and Pristiq have been the hardest ones. I remember I had some tinnitus for a couple of days when trying to come off Effexor many years ago. So it's great the CES is helping, even if you have had some setbacks when stopping it seems like you are able to benefit again when you start reusing the CES. Good for you!

[pug]

So happy to hear you are doing better, it is wonderful news for you and all of us also!

[OffEFFexor]

I had a bad week, a wave of symptoms that started after I went to the beach.  I had been doing ok, some mild tinnitus and headaches on and off, and sleeping ok. The beach day was great, but between swimming in the ocean and a mild sunburn, I think it overstimulated my nervous system.

 

That evening, I had palpitations, I could feel my pulse pounding throughout my chest, neck and head, which kept me from sleeping.  This was along with worsened headache and tinnitus.  I didn't have any anxiety or depression, just this thumping pulse and feeling of activation/hyperness.  This was similar to a wave about a month ago that I think was triggered by a vigorous gym workout. 

 

It only lasted a week, and compared to prior months it was a mild wave.  When it stopped, I had a day and a half that felt really great, 100% symptom free.  That 36 hour window was a fantastic feeling of normal; I'm not sure I've had a day like that in the past year.  This is the way I expect to feel every day once I've fully healed and recovered.  Unfortunately, it did not last, and since that clear window, three days ago, I've reverted to a middle ground that is typical for most days of the past two months; sleeping ok, feeling ok much of the day but punctuated with mild to moderate headache and tinnitus.  I'm also having some tingling/numbness in my feet and hands, it never lasts more than a few minutes.  This is new, and it will probably pass like dozens of other symptoms have come and gone over the months, but it does worry me a little bit.

 

It is like the months of the winter and spring I was on a huge roller-coaster with severe ups and downs; while the past two months it has been a kiddie ride, with much milder ups and downs but still rumbling through persistent, mild but nagging symptoms. 

 

I am grateful for being well past the worst of things, being able to work, socialize and do all the normal chores of life even on what are relatively bad days.  I am frustrated that nearly a year after this prolonged withdrawal syndrome started, and eighteen months since my last dose of an AD, I'm still having persistent symptoms punctuated by waves and windows. 

 

The super clear 36 hour window I enjoyed was a reminder of what healthy normal feels like.  I had forgotten.  I wish I could correlate something I am doing or not doing with the symptom pattern, but I'm at a loss.  The waves, windows and daily coming and going of symptoms apparently have their own timetable.  I'm not even sure the last two waves were actually triggered by increased activity (exercise/going to the beach.)  But overall, I am sure I am slowly, gradually healing.  Despite the small and large ups and downs, the improvement is clear and definite.

 

I stopped using the CES device in the middle of the last wave, and restarted it after my 36 hour window.  Just once a day, 10 minutes.  I think it is helping with my sleep, but I really can't tell. 

[Altostrata]

Very happy to hear you're doing better. I added our cheerful "here comes the sun" symbol

☼

to the title of your Intro topic, to show you're recovering.

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

[OffEFFexor]

Oh, Alto, I fear being hexed! 

 

I thank you for the sun symbol; I do think I am well on the way to full recovery.  Sometimes it feels right around the corner, sometimes it feels months away.  But all along, I have carefully and critically evaluated your writings and information about withdrawal to be true and accurate. 

 

If you say I'm ready for the 'Here Comes The Sun', I believe it.  Thank you for everything you do.

[Altostrata]

Well, thank you. That is high praise indeed.

 

Keep up the good work!

[OffEFFexor]

Quick update.  I had a week-long wave, felt pretty bad when I was in the middle of it, but even the worst days the symptoms didn't last all day long.  A couple of nights I only slept an hour or two, and the headache/tinnitus/brain fog/palpitations/activation were pretty bad, and a little bit of depressed mood at times, but all these symptoms would relent after a few hours.  Nowhere near as bad as it was three or four months ago, but much worse than in recent months. 

 

I've been using the CES through this wave, once a day for 12 minutes at setting 2.  It is so hard to say if it is helping, but I think it might have a little benefit.

[clearday]

Thank you for posting on my thread -

 

Interesting that our recovery has such similarities -

 

Hard to believe this stuff will ever go away, but many have been where we are, and have recovered - we have real reason to hope.

[SquirrellyGirl]

Hi OffEFFexor, 

 

How are you doing now?  It has been almost two months since we last heard from you!  Since I went off Effexor a year ago last summer and ended up reinstating this June, not realizing that all my problems were due to Effexor WD, I am very interested in your progress!  I am doing the slow taper off my reinstatement dose of 37.5 mg.  

 

I hope your absence means life has been good and you've been in a nice long window!

 

SG

[OffEFFexor]

Hey, thanks for posting on my thread.  I wish I had good news to report, but I've been struggling.  I had a pretty bad six week or so wave, with a lot of ups and downs.  The severity of most of the symptoms was milder, but my mood was pretty depressed for most of this time.  About a week ago, it seemed to break, and for a few days I felt better than I have for months; but the last week or so has been difficult again.

 

The ups and downs come much more quickly; when I am having a bad day it is punctuated with chunks of an hour or two of relief.  I can swing from good to bad several times during a single day. 

 

I just hold on when the headache, tinnitus, brain fog or crying spells hit.  And they do pass.  The whole ordeal will pass, but it has been very tough lately.  I haven't even read the site very much lately, I'll have to get caught up on everyone else.

[KarenB]

I like to know how you're doing too, as I'm just starting getting off Effexor. 

 

Please excuse me as I haven't read your whole thread, but I'm always interested in supplements people choose (there's so many...)  I see in your signature what you take, and I wondered if maybe some people can take more supplements than are recommended on s/a.  I have fish oil and Vit.E only, and am about to start mag.citrate.  I've been reluctant to try others because I'm generally sensitive to everything since w/d.  But I guess the ones you list there are helpful for you? 

 

Hope your wave keeps improving...

KarenB

[DaddyCee]

Hey, thanks for posting on my thread.  I wish I had good news to report, but I've been struggling.  I had a pretty bad six week or so wave, with a lot of ups and downs.  The severity of most of the symptoms was milder, but my mood was pretty depressed for most of this time.  About a week ago, it seemed to break, and for a few days I felt better than I have for months; but the last week or so has been difficult again.

 

The ups and downs come much more quickly; when I am having a bad day it is punctuated with chunks of an hour or two of relief.  I can swing from good to bad several times during a single day. 

 

I just hold on when the headache, tinnitus, brain fog or crying spells hit.  And they do pass.  The whole ordeal will pass, but it has been very tough lately.  I haven't even read the site very much lately, I'll have to get caught up on everyone else.

 

Hi OffEFFexor, sorry to hear you are struggling I am intrigued to find out if you get morning anxiety / cortisol spikes?

 

The windows will get longer I am sure of this. You are healing and you will come out the otherside a new, healed and happier person.

 

DC.

[SquirrellyGirl]

Hey, thanks for posting on my thread.  I wish I had good news to report, but I've been struggling.  I had a pretty bad six week or so wave, with a lot of ups and downs.  The severity of most of the symptoms was milder, but my mood was pretty depressed for most of this time.  About a week ago, it seemed to break, and for a few days I felt better than I have for months; but the last week or so has been difficult again.

 

I am so sorry you are still having such a difficult time of it.  I hope you don't mind that I used your intro as an example to someone who was thinking of doing an Effexor CT! 

 

I was just remembering going to see Into the Woods with a friend when I was in WD, and it was a surreal experience where I ended up feeling extreme anxiety and doom towards the end of that very dark movie!  It was the absolutely worst movie for me to have seen that day!

 

I will be doing a med check with my p-doc at the beginning of December, absolutely dreading it.  He doesn't believe in protracted WD and thinks it is OCD that I am weighing out my little balls of venlafaxine.  I'd love to give him the link to your intro, should he dare to come on this site, to see that a doctor is going through this, one who has found a p-doc who has been understanding.  Do you still see your p-doc?

 

SG

[OffEFFexor]

Thanks for posting messages on my thread, everyone.  I'm still having some very difficult days, I feel like the last two months and particularly the last two weeks have been big slides backwards, with more severe symptoms.  There have been some ok days, and some pretty good days, so it has not been unrelenting suffering.  The length of this process, 14 months and counting from the onset of chronic withdrawal, 20 months since cessation/CT is wearing me down, just as any chronic illness will wear a person down.

 

Karen B, the one supplement that seems most closely associated with relief is the magnesium.  But generally it is very difficult for me to know if any of the big handful of supplements is helping, hurting or making no difference.  When I skip them for a couple of days, I think the symptoms increase, but I'm really not sure.

 

Daddy Cee, most of the time I agree that this will end and one day, hopefully soon, I'll emerge healthy and happy.  But there are days and hours when this feels impossible.  Thankfully, hope and relief return before I completely lose faith.  Some mornings I get the cortisol surge, some mornings I don't.  I used to get that more regularly, for years, while I was on meds.  I took it as a normal part of waking up.   It was and remains pretty mild, with minimal or no anxiety, but annoying when it hits at 4 or 5am.

 

Squirrelly Girl, I don't mind a bit.  Not the first time I've been pointed at as a cautionary tale.  That's like an old Elvis Costello lyric: "Oh tell your other children not to do as I have done."  I see my psychiatrist each week; he is frustrated at having nothing to offer to ameliorate the withdrawal symptoms.  When the depressed mood becomes more prominent, as it has lately, he is concerned but he accepts both the diagnosis of withdrawal syndrome, and he respects my extreme reluctance to consider medication if the depressed mood becomes worse or more persistent.

[SquirrellyGirl]

Hi OffEFFexor, 

 

I hope you are doing a bit better than the last post!  Today, I have to go to my p-doc for a med check, and I'm dreading it!  BUT, I printed off the first few pages of your intro, including btdt's response, and I'm going to challenge him to read it!  I'm quite a shy person and not one to have the courage to challenge authority directly, so I'm nervous about whether I can pull this off!  But I feel these guys have got to be made aware!  I'll let you all know how I fare!

 

I am focusing on dropping mirtazapine, 5% every two weeks, while leaving the Effexor alone at just around 29 mg, maybe dropping a bead each time I weigh out a couple of weeks' worth.  The last couple of months have gone quite well and I feel better now than when I reinstated 37.5 mg and was on 30 mg mirt, too.  Down to 16 mg mirt!!!

I was lucky that reinstatement worked after about 10 months off after a quick taper off Effexor (I think I was at 75 mg when I started dropping).  i'm just so pained for folks like you who are still suffering so profoundly from protracted withdrawal from fast tapers or CT.  It is just terrible, terrible.  I feel a real drive to help people who wish to come off and aren't yet at that critical place.

 

I'm not a religious person, but I am developing spirituality (thank you, Eckhart Tolle), so my thoughts and prayers are with you and all who are in the dark hole :-)

 

SG

[leahy]

Hi OE,

 

I just read your thread and a couple of things popped out at me.

 

1.

I noticed that you mentioned at one point that when you took benadryl 20 minute later you were hungry, able to eat and even cooked dinner. I recently did some research on the relationship of histamine and hunger and was very surprised to see the connection.  Just google histamine and hunger. For example: Brain Histamine and Eating Behavior

My daughter (D) has been suffering greatly with abdominal pain for weeks unable to eat. The is usually preceded by eating leftovers or take out food. After reading GiaK's excellent thread about histamine intolerance D and I are pretty convinced she sufferer from histamine intolerance. She lives far away from me but last week-ish she visited and by the end of the week no pain.

 

She is extremely thin and that scares me. Scares me a lot. Worries me sick, actually. D explains she cannot eat. She feels no hunger, no headache hunger - no desire or need to eat at all. This is what prompted me to see if there is a relationship between histamine and hunger. How could she feel NO hunger for WEEKS? It was eye opening for me. I am 40/50 overweight from taking Remeron a strong antihistamine. I am extremely hungry. D is not. Yes. D has seen a colon doctor. Nothing is wrong... IBS maybe.

 

I finally bought benadryl for her and she regained her appetite. Thank God! And she went back to her home now and left the benadryl here. Neither one of us think it is a good long term solution. Now that I think about this I remember D took antihistamines (Zyrtec) on a regular basis for many, many years. I can't remember why. My brain still has trouble with remembering things. I am wondering if D's taking of AH for years and then stopping provoked D's intestinal problems. I am convinced taking AH cannot be good on a long term basis. However, I still have not completely figured it out. I was happy she was eating again for 10 days and I hope this continues. 

 

I'm sorry, OE. I am wondering how these OTC medications might be affecting you? It's been so long for you in protracted WD.

 

2. More than once you mention other people are suffering more than you.  I feel that we cannot compare pain. Pain is pain. Your pain and despair is very real. Comparisons that are helpful are great but comparison that diminish your suffering not so much. To quote Hibari. "I am too vulnerable right now and it's easy to get into compare and despair." 

 

I hope I was helpful to you in some way. I feel your pain. Most of my days are like yours. The headaches are life altering for me every time they happen which is very often and always after insomnia nights. Today I must be in a window - no headache/nausea. Knock on wood. 

 

Leahy

[SquirrellyGirl]

Hi Leahy, 

 

That was really thought provoking about your daughter and the antihistamine connection!  I know when I was in protracted withdrawal from Effexor this spring, I completely lost my appetite and lost weight. I could care less to eat.  I was put on Remeron before I realized what was happening.  I have gained almost 10 lb though I don't think my appetite is overboard.  I think Remeron messes with our metabolism as well as increasing appetite. 

 

This all makes me wonder if the Effexor was also acting as an antihistamine.  It seems that many antidepressants do affect the H1 receptors.  

 

And the fact that your daughter had been using Zyrtec (habitually?) for a long time, leads me to wonder if she isn't in withdrawal from Zyrtec!  Maybe she should go back on that one and then do a tapper of some kind!  I've seen reference to people needing to taper acid blockers and the like, so stands to reason the same would be true for the Zyrtec. Who woulda thought?!! LOL!

 

I am so happy that you are in a window!!!  And I am also so happy to have gotten to know so many people through this forum!  You all do feel like family somehow!

 

SG

[OffEFFexor]

Hi Gang:

 

It's been about two months since I posted, and I have barely read the forum over that time.  I've had a rough go of it, more of the same rollercoaster of symptoms, waves and windows.  Some of the days and hours have been the worst of the whole year and a half ordeal, and I've had some beautiful days and hours of nearly complete relief.  I have been desperate enough to consider drastic measures, like checking into a hospital or trying reinstatement at this late date; I have felt so healthy and recovered at times to be sure that I am nearly finished with the nightmare of withdrawal. 

 

Nearly every symptom I've listed in this thread has revisited to some degree, but the biggest hits remain tinnitus/headache/brain fog/low energy is the main combo, joined by palpitations severe enough to awaken me or to keep me awake all night long.  The palpitations started to be frequent only a few months ago.  Usually it is feeling my heart thumping, but sometimes it is feeling my pulse in other parts of the body, sometimes it is a buzzing sensation in the chest or elsewhere. For shorthand I call all these sensations 'palpitations'. 

 

Some nights I sleep pretty well; other nights, roughly two a week, I don't sleep at all.  Crying and the neuro-emotion type of fake depression pops up some days, but gratefully I have not been suicidal. Also, depersonalzation, racing thoughts, migrane-type headache, weird appetite ups and downs come and go randomly. I do feel more genuine depression on some days, I think a result of being ground-down by the months on end of this illness eroding my emotional reserves.  Depression is a normal, frequent response to any chronic illness, and this is what I sometimes feel. 

 

One highlight, about two months ago the palpitations and headache were particularly severe, keeping me up all night.  I thought to check my blood pressure, and it was high.  Very high.  Like imminent danger of having a stroke high.  Under different circumstances I would've immediately gone to the ER, but fear of being put on psychiatric drugs, or having to lie to avoid them kept me from that.  Also I wasn't thinking clearly.  The next day, I started myself on a blood pressure medication, and it quickly came under control.

 

The med I picked was clonidine, because I had experience using it on patients for quick control of super high blood pressure.  Then, something funny happened; my WD symptoms faded to about 10% of maximum, and over the next five days I felt really great.  I started to wonder if my symptoms were in part due to uncontrolled blood pressure, or if the clonidine was a magic bullet that cured my symptoms.  It didn't last - after five days my symptoms returned, gradually increasing to the prior levels, even the palpitations, even though my blood pressure remained controlled.  Well, it was a great five day window, that probably had something to do with the clonidine, but it was not a cure. 

 

I'm still taking the same bunch of supplements and symptomatic meds listed below, and using the CES device daily.  I have little idea if any of them are helping or hurting.  I'm still able to work half-time, sometimes it is easy, some days I can barely get through.

 

Anyway, even though I did not feel up to reading or posting here, spitting this out feels good.  Reading the struggles other people are enduring helps me appreciate the periods of weak symptoms or outright windows I enjoy.  Learning about Blu's death hurt, but also helps me appreciate surviving this ****.  I stopped Effexor in March of 2014; the chronic withdrawal symptoms kicked in September 2014, and it is now 17 months.  I am really worn down.  A good friend who has supported me throughout called a couple of weeks ago, and said he admired me for hanging on for so long.  I appreciated his complement, but I had to laugh and tell him there is really no other choice.  No alternative that is rational. But to hold on and give my poor injured brain the time it needs to recover. 

[SquirrellyGirl]

Hi OffEFFexor - wow, it is so good to hear from you!!! I've thought of you often and worried about you, but I know you went silent before and I figured it was the same.  I'm sorry to hear it has still been such a rough go of it, and scary about the blood pressure.   I'm glad you caught that!  I know mine climbed when I was in protracted WD, along with increased pulse.  These drugs hit where ever there are nerves and it really can freak people out with the health anxiety due to not really understanding this, I think.  

 

I sure hope you get some longer windows now that you are so far out; you certainly deserve it!

 

SG

[Priscilla]

On 12/17/2014 at 8:32 PM, OffEFFexor said:

How has magnesium threonate been for you?

Summary:
On and off several tricyclic ADs starting at age 25 (amitriptyline, imipramine, nortriptyline) for depression.
Quit alcohol and other drugs age 37; started Prozac, for about eight years.
Stopped Prozac for six months; started Effexor XR age 47.
Took Effexor XR 225mg for ten years
Now age 57, attempted weaning January 2014 three times, shortly returned to full dose due to withdrawal effects.
CT March 11, 2014, eight days of Prozac as a bridge. Five days of horrible WD symptoms, then gradually receded over three weeks.
Nearly six months doing very well, then WD symptoms/wave reappeared mid Sept. 2014
Dec. 2014 WD symptoms gradually decreasing as a three month long wave of symptoms subsides.