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mirage

Hi to everyone. I am new to the group. This is my journey. I have battled constant anxiety, vertigo, dizziness, nausea, jaw and head pressure, foggy, heavy head and over sensitivity to lights, noice and dark rooms. Was put on Wellbutrin 300xl 8 years ago by my obgyn after my mom passed from cancer. Was told it was safe to take with very few side effects. I filled the script and never looked back. I stayed on it all of this time because I was never informed about going off of it and the script was filled every year with no questions asked. It just became part of my daily routine to take it. Ignorance on my part. 

 

 In September of 2016, I started having bouts of dizziness and nausea. Saw my internist. Had some blood work done. All was normal. She sent me to gyn thinking it was menopause. Never heard of those as menopausal symptoms but I made the apt and went. Gyn said, not menopause. It then occurred to me that maybe it was the Wellbutrin and that I should stop it. So, that is what I did. Took the last dose on May 8th, 2017. The month of May was fabulous. On June 2nd it all ended. Half way through the day severe vertigo came out of the blue. I had it for about 4 days. Following that came all of the other symptoms along with dark thoughts and constant heart racing. No sleep. Maybe an hour here and there but only to be woken up by abrupt scares and a pounding heart. 

 

I saw my internist who said I had developed extreme anxiety and that, sometimes this happens at my age, 53. Hmmm, I bought it. Eight weeks after I took the last dose of Well 300, my dr put me back on Wellbutrin 150xl. It helped, but only slightly. She sent me to a psychiatrist. In Sept 2017, she prescribed 30mgs of remeron on top of the Well. I was so very sick. My weight went from 115lbs to 104 and I could barely sip water. I was then sent to a psychologist to help me get over the anxiety. While I loved her, it was not helping and she agreed, that this was medical and not anxiety. I have seen internist, gyn, psychologist, psychiatrist, neurologist, ENT, vestibular specialist and ophthalmologist. I have had every tests ran. The only abnormal labs I have is high cortisol. I have told each Dr that I quit Well cold turkey and none seemed to think that could have caused this. Which, is why I am here. It is not a fluke that this happened to me after I stopped the med.

 

Some of my above, early symptoms have improved but I am FAR from being normal. FAR from feeling well and FAR from living the life I had. I was weaned off of the remeron 3 weeks ago with a one month wean. Too fast, because some of the symptoms that were gone, are now back. I am not weaning off of the Well 150 until I get some stability. 

 

I have tried supplements but anything I add seems to give me side effects instead of helping. Could use some advice if anyone has any. 

 

 

 

 

 

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mirage

Thinking about re-instating the remeron at a low dose to see if that helps with some of the symptoms that were better and have now gotten worse or, am I worse because of a wave in this process and should I stay on course? Could use some advice on this. 

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Altostrata

Welcome, mirage.

 

When did these symptoms start?

 

On 2/22/2018 at 4:34 PM, mirage said:

I have battled constant anxiety, vertigo, dizziness, nausea, jaw and head pressure, foggy, heavy head and over sensitivity to lights, noice and dark rooms.

 

It looks like you had withdrawal syndrome from going off Wellbutrin. When you said 150mg helped somewhat, how did it help? What was not helped? What symptoms got better and now are worse?

 

Can you give more information regarding your experience with Remeron and other psychiatric drugs? When did you start Remeron, what dosage were you taking, how did you go off?

 

 

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ChessieCat

Hi mirage and welcome from me too,

 

We ask all members to create a drug signature.  This appears below every post you make.  Please update it whenever you make a change.  This is the preferred format which makes it easier for us to see your drug history at a glance:

 

A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

  • Please leave out symptoms and diagnoses.
  • A list is easier to understand than one or multiple paragraphs. 
  • Any drugs prior to 24 months ago can just be listed with start and stop years.
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
  • Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
  • Link to Account Settings – Create or Edit a signature.

 

This is your own Intro topic where you can ask questions and journal your progress.  We suggest that members visit each others Intro topics so that can support and encourage each other.

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mirage
8 hours ago, Altostrata said:

Welcome, mirage.

 

When did these symptoms start?

 

 

It looks like you had withdrawal syndrome from going off Wellbutrin. When you said 150mg helped somewhat, how did it help? What was not helped? What symptoms got better and now are worse?

 

Can you give more information regarding your experience with Remeron and other psychiatric drugs? When did you start Remeron, what dosage were you taking, how did you go off?

 

 

The symptoms started about 5 weeks after stopping the Wellbutrin 300xl. My dr. put me back on Wellbutrin but only at 150xl about 8 weeks after I had stopped the 300 and about 5 weeks after my symptoms started.  After going back on the med, I had less intrusive thoughts. However, the crazy, heart pounding anxiety, not able to sleep and constant dizziness, nausea and hyper sensory issues did not let up. 

 

In September, 15mg of Remeron was added to help with sleep and weight gain. As I was unable to even sip water. My weight was going down very fast and I am already a small person. The Remeron did help with being able to eat, but did not really help with sleep or any of the other symptoms. At the end of September, the dose was upped to 30mgs. Which, again, just helped with being able to eat. 

 

In early November, I had another severe bout of vertigo. Lasted again for about 4 days. Daily I suffer with constant dizziness but I have had 2 bouts of days of, room spinning vertigo. 

 

In mid November, the dose of Wellbutrin was upped to 300. I was on that for about 5 weeks when I decided to go back down because the side effects were unbearable. I was surprised by this since I was on the 300 for 8 years with zero side effects. The side effects from the upped dose was severe head fog, at times I couldn't even think. Decided not to drive because I was so out of it. My dr. had me stop the 300 immediately. 

 

On January 8th I started weaning off the Remeron. It really wasn't doing much of anything and I had, at that time, put the 9 lbs back on that I had lost. My Dr. started me on the wean. She cut the dose in half. Immediately, I had increased problems with the symptoms I already had. I decided to go down to 22.25 for a week and then lowered that to 15 for a week then to 7.5 for a week then to 3.25 for one week then off. I had a terrible headache which started about 3 days after the last dose. Was doing okay until about 2 weeks off when the dizziness and nausea, which I still had, increased a ton and more anxiety.

 

I did speak with my Dr. about re-instating. She had suggested going back to 7.5 but my intuition told me to go lower. So 2 nights ago I started back on 3.75. 

 

I have to say, I have made improvements since this nightmare began in June. When it first started I had huge problems with my peripheral vision, non stop heart pounding, extreme nausea and dizziness, headaches, pain and pressure in my head which radiated down to my jaw and created a feeling of fullness in my ears, intrusive thoughts, not able to sleep but a few hours at a time, hyper sensitivity to light and sounds and I could not watch, nor talk about anything sad, violent or scary. 

 

My internist had decided early on that this was extreme anxiety and that the symptoms I was having were stemming from that. I started seeing a psychologist who had decided, along with me, that this was all medical and not anxious thinking. She was the only one on board with it stemming from stopping the Wellbutrin. Unfortunately, she just works with people who suffer from anxiety and there wasn't much she could do to help. I fell for the diagnosis in the beginning as I was under a lot of stress taking care of 2, sick elderly relatives and one who had passed in March. But...at 52, I have never, ever suffered from any type of nervousness or depression. I guess I went with it because I was looking for an answer. As time has gone by, and I am not well, I started looking further, which has lead me here. 

 

Here is where I am now, very few headaches, peripheral vision is good, nausea is better {although still there}, the head pressure and pain is less, heart pounding anxiety is now occasional in the day and goes away relatively quickly, However, I do have an underlying jittery nervousness. No intrusive thoughts and the sensitivity I had has become much less. Occasionally, it pops up. There was a period of several months that I couldn't even watch tv. The dizziness is still with me in full force and never seems to go away. I feel, sort of, heavily medicated, or like I drank too much. 

 

I am not a drinker and I have stopped all caffeine since this began. I split a .25 Xanax into thirds and take, one third of that, three times a day. I was told that I could up that but I do not want to add another problem to this. That dose seems to take an edge off and I will make myself tolerate the side effects without the help of another med. 

 

Since this all began, I still manage to work out every day. I was one who did hour long, hard workouts. I ran about 20 miles a week. Have not been able to even jog. So, I walk and 3 days a week I do light weights. I have always done yoga and I still do that 1 day a week but a much lighter version. I do about 30 minutes of meditation a day and I make sure I walk my dogs every morning. They are much shorter walks because the dizziness makes if tough. I am fortunate in the fact that, I am an empty nester and I only work 3 days a week and I can be flexible with that if I'm having a particularly terrible day. I have a very supportive husband of 33 years. In my situation, I think the Drs. I am seeing, have done what they thought was the correct things to do to help me. Just goes to show, that everything is not known and Drs. are not God. You have to be an advocate for yourself and search for answers. In the blink of an eye, I went from being a very healthy, vibrant person, living a full energetic life, to barely being able get through a day.

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mirage
On ‎2‎/‎22‎/‎2018 at 6:34 PM, mirage said:

Hi to everyone. I am new to the group. This is my journey. I have battled constant anxiety, vertigo, dizziness, nausea, jaw and head pressure, foggy, heavy head and over sensitivity to lights, noice and dark rooms. Was put on Wellbutrin 300xl 8 years ago by my obgyn after my mom passed from cancer. Was told it was safe to take with very few side effects. I filled the script and never looked back. I stayed on it all of this time because I was never informed about going off of it and the script was filled every year with no questions asked. It just became part of my daily routine to take it. Ignorance on my part. 

 

 In September of 2016, I started having bouts of dizziness and nausea. Saw my internist. Had some blood work done. All was normal. She sent me to gyn thinking it was menopause. Never heard of those as menopausal symptoms but I made the apt and went. Gyn said, not menopause. It then occurred to me that maybe it was the Wellbutrin and that I should stop it. So, that is what I did. Took the last dose on May 8th, 2017. The month of May was fabulous. On June 2nd it all ended. Half way through the day severe vertigo came out of the blue. I had it for about 4 days. Following that came all of the other symptoms along with dark thoughts and constant heart racing. No sleep. Maybe an hour here and there but only to be woken up by abrupt scares and a pounding heart. 

 

I saw my internist who said I had developed extreme anxiety and that, sometimes this happens at my age, 53. Hmmm, I bought it. Eight weeks after I took the last dose of Well 300, my dr put me back on Wellbutrin 150xl. It helped, but only slightly. She sent me to a psychiatrist. In Sept 2017, she prescribed 30mgs of remeron on top of the Well. I was so very sick. My weight went from 115lbs to 104 and I could barely sip water. I was then sent to a psychologist to help me get over the anxiety. While I loved her, it was not helping and she agreed, that this was medical and not anxiety. I have seen internist, gyn, psychologist, psychiatrist, neurologist, ENT, vestibular specialist and ophthalmologist. I have had every tests ran. The only abnormal labs I have is high cortisol. I have told each Dr that I quit Well cold turkey and none seemed to think that could have caused this. Which, is why I am here. It is not a fluke that this happened to me after I stopped the med.

 

Some of my above, early symptoms have improved but I am FAR from being normal. FAR from feeling well and FAR from living the life I had. I was weaned off of the remeron 3 weeks ago with a one month wean. Too fast, because some of the symptoms that were gone, are now back. I am not weaning off of the Well 150 until I get some stability. 

 

I have tried supplements but anything I add seems to give me side effects instead of helping. Could use some advice if anyone has any. 

 

 

Started Wellbutrin 300xl mid July, 2009

Stopped Wellbutrin 300xl cold turkey May 8, 2017

Started Wellbutrin 150xl July 7, 2017

Started Remeron 15mg August 15,  2017

Upped Remeron dose to 30mg October 4th, 2017

Upped Wellbutrin to 300xl November 24, 2017

Lowered Wellbutrin 300xl back to 150xl January 8, 2018

Started weaning off of Remeron 30mg. Cut to 22.25mg January 11, 2018

Cut Remeron to 15mg January 18, 2018

Cut Remeron to 7.5mg January 25, 2018

Cut Remeron to 3.25mg January 30, 2018

Stopped taking Remeron February 1, 2018

 

 

 

 

 

 

 

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Altostrata
5 hours ago, mirage said:

Here is where I am now, very few headaches, peripheral vision is good, nausea is better {although still there}, the head pressure and pain is less, heart pounding anxiety is now occasional in the day and goes away relatively quickly, However, I do have an underlying jittery nervousness. No intrusive thoughts and the sensitivity I had has become much less. Occasionally, it pops up. There was a period of several months that I couldn't even watch tv. The dizziness is still with me in full force and never seems to go away. I feel, sort of, heavily medicated, or like I drank too much. 

 

I am not a drinker and I have stopped all caffeine since this began. I split a .25 Xanax into thirds and take, one third of that, three times a day. I was told that I could up that but I do not want to add another problem to this. That dose seems to take an edge off and I will make myself tolerate the side effects without the help of another med. 

 

Yes, you had severe withdrawal symptoms from going off Wellbutrin. That's what the inability to eat was, too. Dizziness is a very common withdrawal symptom.

 

It's good you've seen gradual improvement. That's typical of withdrawal syndrome -- very slow and frustrating, symptoms come and go and change, but overall gradual improvement. We might be able to make some small adjustments that will help.

 

What is your drug schedule each day? Please keep daily notes on paper of your symptoms, when you take your drugs, and their dosages.

 

Many people do better with fish oil and magnesium supplements, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

http://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

A lot of people find them helpful. Try a little bit of one at a time to see how it affects you.

 

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mirage
45 minutes ago, Altostrata said:

 

Yes, you had severe withdrawal symptoms from going off Wellbutrin. That's what the inability to eat was, too. Dizziness is a very common withdrawal symptom.

 

It's good you've seen gradual improvement. That's typical of withdrawal syndrome -- very slow and frustrating, symptoms come and go and change, but overall gradual improvement. We might be able to make some small adjustments that will help.

 

What is your drug schedule each day? Please keep daily notes on paper of your symptoms, when you take your drugs, and their dosages.

 

Many people do better with fish oil and magnesium supplements, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

http://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

A lot of people find them helpful. Try a little bit of one at a time to see how it affects you.

 

THANK YOU!!! I thought withdrawal had to be the cause. There was no other explanation for the illness and the timing is almost exact. I have read that Wellbutrin has a longer half life so it would make sense that I would get the symptoms later. I also had a DNA test done by my Dr. and found out that I am a very slow metabolizer of a lot of these meds.

 

The dizziness, right now is my worse symptom. It is constant. It starts when my eyes open in the morning and ends when they close at night. If that could go away, I would be so much better. I did see a vestibular specialist and a P.T. for vestibular/balance issues. I have exercises I do daily to help strengthen my vestibular system. Not sure if this will help or not but I'm giving it a try. I have tried meclizine for the dizziness and zophran for the nausea. Neither help much. 

 

In the morning I take calcium, vit D, fish oil, a multi B, 15mgs of methylfolate  and 150xl Wellbutrin. In the evening, magnesium, vit C and 3.25mg of remeron. One of my Drs. recommended Sam e and Pharma Gab. Neither worked for me. I got terrible side effects. I am realizing my system is very fragile right now and there isn't much I can do. 

 

I did remember I had a few other symptoms in the beginning that have now gone away, shakiness in my hands and constant muscle ticks all over my body. 

 

This has been a big eye opener for me. It has caused my life to come to a complete stop. I have had days, here and there, that have been better, but none that have been symptom free and none where I feel like my old self. Praying for that to come. 

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Altostrata

Hello, mirage. How are you doing?

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mirage

Thank you Altostrata. I am getting through each and every day. I can function and I work part time. The dizziness doesn't affect my balance at all. It is just always there like I'm standing on a dock. I did go through a series of tests that ruled out Meniere's and a few other vestibular disorders. I also went through about 3 weeks or physical therapy and continued to do the exercises on my own. However, it has been an entire year and nothing has helped the dizziness. My very first symptom of withdrawal was severe vertigo. 

 

It has been an interesting journey. I seem to make progress and then I get knocked back hard with new symptoms or heart pounding anxiety. I'm guessing that is waves and windows? I haven't had a time, yet, when I am symptom free. I have had times of less symptoms. Does that make sense? I keep telling myself that all of this is healing and that I have to go through this to get better. I take it one day at a time and, sometimes, one hour at a time. No matter, I am a fighter and I will not be taken down by this. One day, I will be back stronger and I will have learned a lot along the way. 

 

I have had to have a tooth removed and an implant put in. Two different surgeries, one in December and one early May. Both surgeries set me back extremely and have brought on vertigo. I just learned that anesthesia contains a stimulant and that you can ask for one that doesn't. I have to get the permanent tooth and the crown in July and I am, finally, starting to understand this withdrawal and things that make it worse. So I am going to discuss another option for the procedure with my dentist.

 

It is so difficult to have this happen but I will not lay down and cry. Any advice you have would be greatly appreciated. 

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Altostrata

That would be about right for recovering from post-acute withdrawal syndrome. Have you tried fish oil and magnesium?

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mirage

A couple more thing, sorry, I once read that dizziness can be the brain getting its visual perception reprogrammed. Any chance that makes sense? 

 

I am taking, Platinum Omega 3 fish oil. It contains, 756mg of EPA, 228mg of DHA  and, 1,000iu of vitamin D. I take 1 of those at night and 1 in the morning. I also take, Magnesium Glycinate 400. I take 2 of those at night. I tried a methylated B but it didn't work for me. It is a powder capsule. Maybe I should try taking half of the powder instead of the entire pill? I do take 1mg of Methylfolate since I tested positive for the MTFHR gene. 

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Altostrata

I don't believe the cause for withdrawal dizziness has been found. Like so many symptoms, it's probably dysautonomia.

 

That's good strong fish oil. Not sure about the Vit D part. Does it disturb your sleep?

 

Magnesium is best absorbed in small doses taken throughout the day. You might cut your magnesium tablets up and take half at a time.

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ChessieCat

Hi mirage,

 

It will be helpful to members if we know your drug history.  Please create your drug signature.  Thank you.

 

On 2/24/2018 at 6:43 PM, ChessieCat said:

A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

  • Please leave out symptoms and diagnoses.
  • A list is easier to understand than one or multiple paragraphs. 
  • Any drugs prior to 24 months ago can just be listed with start and stop years.
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
  • Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
  • Link to Account Settings – Create or Edit a signature.

 

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mirage

Hi ChessieCat, Here is my history.

On ‎2‎/‎24‎/‎2018 at 1:27 PM, mirage said:

Started Wellbutrin 300xl mid July, 2009

Stopped Wellbutrin 300xl cold turkey May 8, 2017

Started Wellbutrin 150xl July 7, 2017

Started Remeron 15mg August 15,  2017

Upped Remeron dose to 30mg October 4th, 2017

Upped Wellbutrin to 300xl November 24, 2017

Lowered Wellbutrin 300xl back to 150xl January 8, 2018

Started weaning off of Remeron 30mg. Cut to 22.25mg January 11, 2018

Cut Remeron to 15mg January 18, 2018

Cut Remeron to 7.5mg January 25, 2018I

Cut Remeron to 3.25mg January 30, 2018

Stopped taking Remeron February 1, 2018

 

On ‎2‎/‎24‎/‎2018 at 1:27 PM, mirage said:

I'm currently just taking Wellbutrin 150xl  

 

 

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mirage

Altostrata and ChessieCat, i do have some sleep issues. Some nights I can fall asleep and some nights I have to take a half of a benedryl. Maybe I should take the night time fish oil and a magnesium in the afternoon as well? 

 

The dizziness has to be from the withdrawal. I am trying hard to believe it will go away when this journey comes to an end. It was the first symptom to come on and I have a feeling it will be the last one to go. 

 

The symptoms I have left are:

dizziness/vertigo

anxiety

ear/jaw pressure

some times a little blurred vision

some mornings waking early 4am ish and not able to go back to sleep

 

However, when I look back to this time last year, I had many, many symptoms. Each day was terrifying. I pray that I am on the road to recovery, all be it long, since many symptoms have gone away. 

 

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Lolita

I see that you struggle with dizziness and anxiety.... I know how fustrating it is!

For myself, the dizziness appeared while on lexapro almost two years ago. The doc made several tests just like you but it all came back normal. Even with different ad changes, the main symptom except anxiety was my dizziness.

 

Now that I am tapering, the dizziness and vertigo almost vanished. Sometimes I have it but not as much!

 

Your dizziness also started while on meds right!? But was worse after.... So maybe it was the tapering that was too fast!?

 

I am tapering but have all king of symptoms. Dizziness is better but not the rest. 

I guess we have to heal and go slow. ...very slow!

 

Take care Mirage!

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mirage

Hi Lolita, thank you for contacting me. I am glad to see you are making progress. It is interesting how everyones symptoms can be so unique. It is good to hear you are getting better. I will look forward to reading your success story. 

 

I had no dizziness during the 8 years of Wellbutrin 300xl. It all started a month after I quit CT. In fact, vertigo was the first symptom. I had a perfectly normal morning that day and it came out of no where while I was working out that afternoon. While I am dizzy every day, all day, I have only had 4 bad vertigo spells where the spinning lasted for several days. At first I was diagnosed with BPPV. The vertigo lasted for about 4 days and then I started to get a LOT of other symptoms and became very ill. 

 

If I just had dizziness I think I could tolerate that better. It just gets so bad that I feel like the room could start spinning at any time. That, of course, ramps up the anxiety.  I keep telling myself that it doesn't matter. I can't stop the vertigo so if it comes I have to accept it and continue to  move forward. It is hard to do but I am diligently working on convincing my CNS that there is nothing to be scared of or worry about. I need to allow and accept. 

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Altostrata

I think you can see that, looking back, you have been healing.

 

19 minutes ago, mirage said:

Altostrata and ChessieCat, i do have some sleep issues. Some nights I can fall asleep and some nights I have to take a half of a benedryl. Maybe I should take the night time fish oil and a magnesium in the afternoon as well? 

 

 

I'd move anything containing vitamin D earlier. Vit D is a daytime vitamin.

 

Magnesium is relaxing, you can take it at night and even in the middle of the night.

 

You might want to take a little melatonin, see Melatonin for sleep: Many people find it helpful

 

and these topics:

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia 

 

Waking with panic or anxiety -- managing cortisol spikes

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

Have you tried acupuncture and chiropractic for your neck and jaw tension? That can affect the ear and dizziness.

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Lolita

Do you think you dizziness has increase or do you start seeing improvement sometimes? Even tiny ones?

 

Yes I had improvement for my dizziness but I probably tapered too fast cause I also have lots of symptoms  (anxiety, oppression feeling, breathing issues, and feel a little down sometimes during the day). I upped my dose a little tonight....well see!

 

I wish we both get healed and just symptoms free very fast!

 

 

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mirage

Thank you Altostrata. I know I am making progress. There are times I just still feel so far away from feeling well. However, for some people that can take a while and for others, not so much. I guess I will have to wait and see. 

 

I will move the fish oil to the morning only and continue the magnesium at night and add it early morning or afternoon.

 

I have tried acupuncture and chiropractor for the jaw/ear tension. I also was getting a massage once a week to help with it but I got vertigo during the last one and so I haven't been back. 

 

I have tried melatonin for sleep but had a bad reaction to it. Maybe I took too much? I took 5mg. Perhaps I should take that down to 1 and see how it affects me? I also bought glasses that I wear at night to block out blue light so I can watch tv and use my computer. I put them on when it starts to get dark. 

 

The dizziness gets more severe when I have had several nights of poor sleep. It is an odd thing. I don't feel tired. I just get dizzier. I can yawn for hours but my body never feels sleepy. 

 

 

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mirage

Lolita, I wish you success. This is the most difficult journey. 

 

I noticed the dizziness gets worse when I don't get sleep. Instead of feeling tired, I just get dizzier. It is very odd but i'm finding that a lot of the symptoms we get are odd. Especially when we have never, ever had any of them before. It does allow me to marvel at the human body and how delicate and smart it is. 

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bgoggles1

Hi mirage, dizziness is my worst symptom. I have a lot of brain symptoms as well such as the brain kind of sloshing around in my head, zaps here and there, tightening or squeezing of my brain, heaviness in my head, Etc. But the dizziness is all in my head. I'm not sure how your dizziness is but it's all in my head and so when I turn my head or talk to people it flares up. It's an awful symptoms so I can sympathize. However I have noticed that it is improving very very slowly. In my waves however it gets intense. Hope you're finding some relief. Also I don't know if you read dizzy girls success story but she had dizziness 24/7 and it was her last symptom to go. But it went. Your symptom will go. It sounds like you've made a lot of progress already.

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mirage

Hi Bgoggles1. Thank you for contacting me. I hate that you have the dizziness too but it is comforting to hear from others.

 

I can understand what you are saying about your brain. I did not get brain zaps, but for a long time, I felt like my brain was scrambled. I started doing puzzle books and that helped a lot. 

 

I'm still figuring out, windows and waves. I think I am currently in a wave and it started Sunday night. I am putting together symptoms that come with my waves. I tend to not get good sleep and I wake up with the 4am cortisol spike. The dizziness gets worse during waves and I get slight nausea and slight head fog. Although the nausea and head fog are much better than they were. I haven't had a time when I have been symptom free since this journey began a year ago. Vertigo was the first symptom I got and I have a feeling it will be the last to go. I will go back and read dizzy girls story. 

 

Hang in there. I am here to lend support to you during this journey.

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Waterfall

Hey Mirage, 

I just wanted to stop by and say hi. 

Thanks for visiting my thread!

It sounds like, while you still have some frustrating symptoms, 

that you've made a lot of progress in the last year. 

I'm so glad for you!

Not that you still have a ways to go, 

but that you've already come so far!

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apace41

Hi, Mirage.  I'm taking your last post on Divalee's thread and copying it here because it is about you.  Then we (and, hopefully others) can discuss it here so we can relate it to you and your symptom set.

 

@apace41 Yes, I want to keep conversation with divalee as well. 

 

I'll go back and look at your thread. One of my thoughts on the dizziness is the anxiety that has been brought on by going off the meds. I had a cast iron nervous system prior to all of this. Never had any anxiety or upset. I could handle and tackle anything so this is really difficult for me to get through and to figure out but, I will, by golly. I won't let it beat me. 

 

The dizziness is daily but I have had 4, pretty bad bouts of vertigo, throughout this journey. Each one was terrible spinning that stayed with me for several days and then the anxiety kicked in FULL FORCE! Vertigo is super scary. In order to push forward, I had to accept that the room may spin, and I can not do one thing to stop it. So, if it happens, then it does. I've also seen a vestibular specialist and I see a neurologist. My neurologist told me that these meds can affect the vestibular system since it is part of the nervous system. Even though it is in our inner ears, it is a large group of nerves. Those can be affected in withdrawal since our entire system gets turned upside down. I never had dizzy issues before this either. I could spin, turn, ride rides, with no issues. Now, I can't even lay flat on my back without the dizziness getting worse. I have to wonder, is it my vestibular system off track or is it anxiety? I guess could be a combination of both?

 

Next, you listed your signature as follows:

 

Started Wellbutrin 300xl mid July, 2009

Stopped Wellbutrin 300xl cold turkey May 8, 2017

Started Wellbutrin 150xl July 7, 2017

Started Remeron 15mg August 15,  2017

Upped Remeron dose to 30mg October 4th, 2017

Upped Wellbutrin to 300xl November 24, 2017

Lowered Wellbutrin 300xl back to 150xl January 8, 2018

Started weaning off of Remeron 30mg. Cut to 22.25mg January 11, 2018

Cut Remeron to 15mg January 18, 2018

Cut Remeron to 7.5mg January 25, 2018I

Cut Remeron to 3.25mg January 30, 2018

Stopped taking Remeron February 1, 2018

 

Which is great.  Now all you need to do is cut and paste it as a true signature so that others can see where you've been and where you are.

 

Here are the instructions so you can do that.

 

How to add or edit your signature

  1. Click on this link to open the correct page in User Settings:
    Create Your Signature in "Account Settings"
    2017-June 12 update: link works on desktop, tablet and mobile phone versions
     
  2. Enter your signature in the space provided.
  3. When you are done, Click on the big black Save button at the bottom.
     

If the link isn't working, follow these steps:

  1. Click on the small downward arrow next to your name in the top right corner of any page.
  2. Select Account Settings from the list.
  3. On the left of the Account Settings page, click on the Signature tab. You will be able to add or edit your signature.
  4. Click on the big black Save button at the bottom when you are done.

 

FOR READABILITY, SHORT LINES ARE BEST.

 

Once that is done, we are ready to rock and roll.  I will respond in the next message.

 

Best,

 

Andy

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apace41
Just now, apace41 said:

I'll go back and look at your thread. One of my thoughts on the dizziness is the anxiety that has been brought on by going off the meds. I had a cast iron nervous system prior to all of this. Never had any anxiety or upset. I could handle and tackle anything so this is really difficult for me to get through and to figure out but, I will, by golly. I won't let it beat me. 

 

I know exactly where you are coming from, Mirage.  I was the same in terms of having a highly stressful job and lots of reasons for anxiety, but never really having much in the way of bad anxiety.  Since my taper journey has begun I have all kinds of nervous system "stuff" that is difficult to deal with.  Symptoms of mine that include dizziness, depersonalization and derealization, insomnia, body pains and good old anxiety, are all symptoms of an overly stressed nervous system.  I agree that the taking and withdrawing from the meds is the most likely source of that stress, especially if you were not like this before.

 

2 minutes ago, apace41 said:

The dizziness is daily but I have had 4, pretty bad bouts of vertigo, throughout this journey. Each one was terrible spinning that stayed with me for several days and then the anxiety kicked in FULL FORCE! Vertigo is super scary. In order to push forward, I had to accept that the room may spin, and I can not do one thing to stop it. So, if it happens, then it does. I've also seen a vestibular specialist and I see a neurologist. My neurologist told me that these meds can affect the vestibular system since it is part of the nervous system. Even though it is in our inner ears, it is a large group of nerves. Those can be affected in withdrawal since our entire system gets turned upside down. I never had dizzy issues before this either. I could spin, turn, ride rides, with no issues. Now, I can't even lay flat on my back without the dizziness getting worse. I have to wonder, is it my vestibular system off track or is it anxiety? I guess could be a combination of both?

 

There are a lot of great resources you can look at that will give you more clarity.

 

On the general subject of dizziness and how it comes to be and potential improvement, see the following:

https://www.seekingbalance.com.au/rocksteady/

 

On the subject of anxiety and how it can hit one in many ways including balance, see the following:

 

https://anxietycentre.com/

 

For an example of someone who has dealt with the hyperstimulation of the nervous system and dizziness in the ABSENCE of medications, see the following:

 

https://www.youtube.com/watch?v=o9LG-1JsjGc&t=596s

 

That should help outline where you and I (and many others) are as I see it.  Thoughts welcome after you look that over.

 

Best,

 

Andy

 

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mirage

@apace41 THANK YOU for all of the  help and information. You are so kind to do all of this. I will for sure create my signature and look into the links you sent me. Things to accomplish this weekend. 

 

Happy Friday and happy healing. 

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apace41
3 minutes ago, mirage said:

THANK YOU for all of the  help and information. You are so kind to do all of this. I will for sure create my signature and look into the links you sent me. Things to accomplish this weekend. 

 

Happy Friday and happy healing. 

 

My pleasure, Mirage.  Happy Friday and healing to you as well.

 

Best,

 

Andy

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mirage

@apace41 Checking in. I was able to get my signature completed. I think? 

 

Thank you again for your help and support!

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apace41

Nicely done, Mirage.

 

You are ready to rock and roll!

Hope you are doing okay.

 

Best,

 

Andy

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mirage

@apace41 Not sure I'm going to rock and roll...yet. lol But some day soon, for sure!

 

I'm hanging in. Had a rough weekend and a tough day today. But, I am plugging along and getting things done. Just when you thing something has gotten better or gone away, poof, it is back and back bad. The anxiety had gotten better but this weekend and today it is ramped up again. Not the heart pounding, attack kind but general, nervous stomach and on edge. It causes all symptoms to ramp up. I keep telling myself to let it be. Nothing I can do about it and I need to not give it any attention. Some days, very hard to do. 

 

I'm thinking this is a wave and it is a strong one. Going to have to ride it out and keep my days as normal as possible. This too shall pass and more healing will have taken place. 

 

How are you doing?

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apace41
8 minutes ago, mirage said:

I'm thinking this is a wave and it is a strong one. Going to have to ride it out and keep my days as normal as possible. This too shall pass and more healing will have taken place. 

 

If you can do this, and really come to a place of acceptance, where you really believe the following:

 

9 minutes ago, mirage said:

I keep telling myself to let it be. Nothing I can do about it and I need to not give it any attention.

 

You will make it so much easier on yourself. I struggle with the concept of "radical acceptance" all the time.  Sometimes it is manageable and other times it is just too hard.  It's an iterative process.  You have the right attitude for success.

 

10 minutes ago, mirage said:

How are you doing?

 

Thanks for asking.  Up and down, up and down, etc.  There are times of small levels of positivity and lots of times of negativity that I am working to try to minimize.  Changing thought patterns is hard when the neural pathways have had years to become deeply etched in one's brain.  But I continue to believe it can be done with effort and time.  

 

This is not a battle for the faint of heart.  

 

Best,

 

Andy

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mirage

@apace41 The anxiety for me isn't even thought provoked. I can be doing, fun, online shopping and it kicks in. It is so automatic. Something I have never felt before this journey began. I had an iron clad system. 

 

I do accept this journey but you are right, it is not for the faint of heart. It is a battle that non of us can wish away. I guess we are just waiting for the divine time when we get our old selves back. In the meant time, all we can do is live each day to the fullest and to the best we can. There is beauty in each day. We have to be open to it and find it. 

 

 

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apace41
1 minute ago, mirage said:

The anxiety for me isn't even thought provoked. I can be doing, fun, online shopping and it kicks in. It is so automatic. Something I have never felt before this journey began. I had an iron clad system.

 

Understood. What you are feeling is, in Claire Weekes' parlance, the "first fear."  It can be a feeling, chemically driven, and can arrive with or without a corresponding thought.  How we react to that will dictate whether or not we travel along the anxiety spiral and have it get out of control.  It is hard to know if it can be controlled in withdrawal but my personal sense is that there is value in learning the tools and trying to apply them.  Sometimes it will help and other times it may not, but once you are healed sufficiently they will be good tools to have in the self-care armament.

 

Best,

 

Andy

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mirage

@apace41 Thank you for that information. In the beginning of this, it felt like someone plugged my entire system into an electrical outlet and fried me from the inside out. Heart racing all of the time. I couldn't watch much of anything on tv. Things seemed too loud and too bright. That has gotten much better. Never have felt any of this before. All of this is new to me and surprising. 

 

 

 

 

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