Symptom shifting - is this normal?

Hello. I was on  20mg lexapro for 13 years. It worked well for so long, until last fall I started having strange symptoms (almost like withdrawal, while I was still taking the med). In February 2015, my dr switched me to 150 mg of Effexor (which was a disaster - awful burning, prickling and spasms in my neck and shoulders along with major agitation, which I had never experienced.) After two weeks of that, she switched me to Prozac. I had basically the same side effects and lasted for one month on that. Finally, I weaned off of everything. I was med free for six months. The first five weeks were great - each day I improved and the anxiety was gone. Then I started developing physical symptoms of anxiety - almost constant feeling of adrenalin and insomnia which eventually led to detachment/depersonalization. Sadly, now I understand that I was going through antidepressant withdrawal syndrome. However at the time, I thought I needed to get back on medication. In early September, I tried Wellbutrin which caused major tachycardia (and three er visits) and a low dose of Ativan as needed (.5 I believe).  Finally, the last er dr told me to stop taking the WB (after 2 1/2 weeks of the med). Five days later, I was able to get into a psychiatrist who started me on Zoloft and klonopin. That was the beginning of my medical crisis.

 

I started with 12.5 mg of Zoloft and .5 mg of klonopin twice a day. Within days of starting both meds, I was having severe side effects - extreme heaviness in limbs and body (could hardly walk), Orthostatic intolerance, rapid heart beat, insomnia, terrible panic (worse than I've ever experienced), breathing problems, lung pain in my back... So many terrible symptoms. I was hospitalized twice and each time, the dr's said it could not be the meds - even though my symptoms began within two days of starting the Zoloft and klonopin.

 

My symptoms increased dramatically with each dose increase of Zoloft (I increased by 25 mg each week over the course of four weeks). I finally made the connection and knew I had to get off the Zoloft. At that point, the psychiatrist agreed to wean me off, but upped the Klonopin dose to 1 mg twice a day.

 

The severe symptoms continued and within five days of klonopin only, i became suicidal. I had never experienced anything like this before. Unfortunately, I didn't realize how dangerous benzos are and I did an extremely rapid taper (two days of .5 mg klonopin, .25 the next day then nothing afterwards.)

 

My total time on Zoloft was five weeks and my total on benzos was 7 1/2 weeks.

 

Another important thing to mention is - my first intro to benzos was at age 12 (for anxiety). I was given Xanax. I have very little memory of this. My mom and I can't remember if I took it "as needed" or if I took it regularly. She believes I only used it for about a year total.

 

Now... My question.  Obviously I had a severe adverse reaction to either the Zoloft, the Klonopin or both. Since I started both at the same time, it's so hard to know what caused what. I still don't understand the severe reaction. I don't know if it was a kindling effect (after trying so many meds within 9 months) or if I just had a biological response to one or both meds. It's all so muddy.... Butt, I am now four weeks off of Zoloft and three weeks off of klonopin.

 

The first two weeks off of klonopin were absolute hell. My heart banged violently and rapidly in my chest, I couldn't breathe, the Othostatic intolerance continued (heart rate increased drastically with movement), extreme body and limb heaviness continued, terrible insomnia and hypnogogic issues (getting "stuck" between asleep and awake, hearing loud noises and feeling raw nerve pain and adrenalin... Terrifying), intense/violent shaking, burning, aching, cramping muscles - mostly in arms and legs, numbness in arms, buzzing/vibration mostly in trunk/chest, but also in limbs.... And a host of other horrible symptoms. An absolute nightmare.

 

Finally, after two weeks off, the intensity of the symptoms changed. The extreme heaviness lifted some. There were moments, hours and even a day or two where it seemed to mostly go away. Over the past three days, that symptom has come back in waves throughout the days and nights. Sometimes lasting hours, sometimes less. My heart rate and pounding sensation was better for several days, but again - over the last three days - this symptom seems to be coming back in waves. Sometimes my resting heart rate is 84, sometimes it's 110. Sometimes I can stand and my heart rate is 105-110 and sometimes it's 135-140 standing.

 

Other symptoms have crept up over the past five days or so - and seem to come and go in strange waves. Some of these are:

 

Cramping, aching, soreness in forearms (never had anything like this)

 

Random buzzing in arms

 

Heaviness (limbs and sometimes body feel like lead - as if I'm being sucked into the ground) continuing to come and go  - This has to be my most terrifying and intense symptom. Absolutely awful.

 

Muscle soreness/sometimes aching in hamstrings and almost a nerve pain/feeling that I've overstretched them (I haven't stretched at all) - started Saturday

 

Internal shaking feeling in legs/arms/body usually accompanied by muscle weakness in arms/legs that comes and goes throughout the last few days. (Started yesterday)

 

Feeling that my legs are going to give out (started yesterday)

 

Feeling out of breath (or almost like the breath is being sucked out of me) when I talk (also comes in waves - not constant)

 

Intense anxiety/feeling hopeless/despair/feeling like this will never end

 

Again, all of this comes in waves and changes throughout the day. Sometimes the feelings last for hours, sometimes five minutes - but constant shifting and seemingly new strange sensations.

 

Is this "normal" to get rid of symptoms altogether and have new once take their place? Or to have the same symptoms come and go so frequently - and to feel new strange symptoms and sensation nearly every day? There are very few moments of peace - when my body feels strangely "normal". At most moments, I am experiencing some type of off symptom or miserable sensation.

 

It is so hard to believe that my reaction has been so intense after such a short period on these drugs. I'm terrified that I will never recover from this horrible disaster. Thankful for this website, as not one dr I have seen seems to understand or be able to explain the reason for any of this. BB has been my life line for weeks.

 

 

(So sorry for the length of this post. Trying to be as thorough as possible.)

 

 

Mommy,

 

Except for the nerve and muscle pain, I have suffered from most of your symptoms for 13 months since CT, especially the heart racing and palps.  You will feel better soon.  You weren't on the drugs long enough to suffer too far out after stopping.

 

Hi Mommy;

Like sofa - I could check off your s/x boxes and even throw a couple more into the mix, and my use was shorter term than yours.

 

Yeah, they come and go like that - waxing and waning.  It completely SUCKS but is part of the healing process.

 

I think everyone here can say they thought at one point: "This is my new normal".  But it ISNT.

 

You WILL recover and heal, but it takes time. 

 

Eat right - nutritious bland meals, exercise when you can and what you can tolerate (this typically revs my symptoms but is then followed by a nice window of feeling better) and get as much sleep as you can. 

 

Healing thoughts coming your way.

Dave

You guys have no idea how thankful I am that you read my long post and took the time to answer and share your experiences. As I said, this forum has been a life line. If not for BB, I would have no information. No one to compare symptoms with. No way of knowing what in the world could possibly be wrong with me.

 

Dr's mean well - and I honestly think they just want us to feel better as fast as possible - but they just don't know the dangers of these meds and the fall out that can occur, even in short term use.

 

Petronomicon, so good to know that you had similar symptoms even after shorter use than me. I'm sorry that any of us have had to go through this though.

 

Did either of you find any thing that relieved the intense heaviness? It sends me into a complete panic every time I feel it coming on. It is the most terrifying symptom for me - along with the tach and heart pounding. Those are the two scariest symptoms I have had - while on the drugs and in the aftermath of withdrawal. They have been debilitating. I literally can't do much - forget exercise or any physical form of distraction (walking, shopping, driving), because I have been so physically incapacitated.

 

Another symptom I failed to mention is weight loss. I didn't have weight to lose as it was (5'2'' and 112 lbs before the Wellbutrin). I now weigh 100 lbs. I can't help but think the high heart rate has contributed to this. I'm trying my best to eat high calories and I'm even drinking boost or ensure. But, this is yet another reason I'm afraid to walk much or be active at all.

 

Did you guys - or anyone else reading this - have these symptoms while taking meds or did it start for you in withdrawal? How long did these symptoms last for you guys? I know it's different for each person, but ... I guess I'm grasping at straws here - just trying to figure out a rough time line.

 

Again, thanks so much for your replies. 

 

Interesting point about the Xanax given to you at such a young age.  It's known that kindling is associated with benzodiazepines, I don't think it's known how long it takes to become de-sensitized to them, if ever.  If we carry this with us forever, then it makes sense that you were already likely to react badly to any form of benzodiazepine.  This is one of those things that is a 'need to know' with prescribing, no doubt about it.

 

As far as your symptoms, as Sofa said, these are very common symptoms in withdrawal.  Here is what is often said here: if other causes have been ruled out, then it probably is withdrawal.

 

There are coping techniques you may find here to help with the symptoms, but the best remedy seems to be time, rest, stress reduction (important to keep the symptoms from escalating/lasting longer), good nutrition and as much sleep as you're able to get.

 

This will pass, but this is a time to let your husband and kids step up a bit and help more than usual so you don't become even more stressed and overwhelmed.  I know this is hard for most moms and women in general, but it will help a lot if you can take some pressure off yourself, especially in the holiday season.

 

Trust me on this. 

Challis, thanks so much. Thank God, I have an amazing husband (and children) who have done everything for me throughout this ordeal. My parents have been wonderful too. But you're right... I have such guilt and sadness over the whole situation.

 

I have always been very hands on at home and with my children. I like my house a certain way, I loved to cook and take care of my people... I was physically active (exercised every day) and ran several days a week. I loved to stay busy and keep everyone entertained and happy. Even taking my kids to school or to different events - and having their friends over constantly - always brought me so much joy.

 

I have had to give up all of that over the past 3 months. I have literally been incapacitated. It's been horrible watching everyone else do what my jobs... All the things I took such pride in doing.

 

This experience has taken so much away from me, my husband, my kids, my parents, my sister, my friends... It has been devastating. I know so many people here can relate. That is the only thing that keeps me going in my darkest hours. And there have been  so many dark hours.  :'(

Mommy,

 

The heart racing and heart palps have been with me since I jumped CT 13 months ago.  The good news is that both of those symptoms are more intermittent now.  I was on Gabapentin for almost 3 years.  I don't even count my short term PRN Ativan use.  You will heal soon and get your life back.  Your family will be there to welcome you back with open arms sweetheart.

 

Love, Sofa

Thank you, Sofa. <3

Mommy - could you make a signature of your use so when you ask questions we know where you're coming from.

It is under your 'Profile - Forum Profile'.

Hope you're doing well today.

Dave

Hi there!

I can relate to a lot of the things you say, the switching of drugs, the meds at a young age, all your symptoms. It is very normal what you are feeling right now.

 

Thanks, Dave. I will work on my signature.

 

Another major symptom I forgot to mention was the extreme fatigue and lethargy. Good grief. I have a hard time going to sleep at night, but I can't get out of bed before 11:00. I'm exhausted. I hate all of this. I just want my body back. If the physical torment wasn't bad enough, the depression from all of this is almost more than I can handle.

 

It's so hard to distract myself when I feel so wiped out, my heart beats too fast and my limbs feel heavy. Do I push through the physical misery anyway or just sit around and do nothing?

 

 

Thanks, Dave. I will work on my signature.

 

Another major symptom I forgot to mention was the extreme fatigue and lethargy. Good grief. I have a hard time going to sleep at night, but I can't get out of bed before 11:00. I'm exhausted. I hate all of this. I just want my body back. If the physical torment wasn't bad enough, the depression from all of this is almost more than I can handle.

 

It's so hard to distract myself when I feel so wiped out, my heart beats too fast and my limbs feel heavy. Do I push through the physical misery anyway or just sit around and do nothing?

 

I did what I had to do and no more.  I put off/bowed out of everything I possibly could.  This won't make you heal faster, but it'll make the journey easier.  Stress amps symptoms, it's as simple as that.  It won't slow the healing, just make it harder to cope with.

 

This is good piece of writing.  Might be something to print and keep nearby.   

 

Coping with Benzo Withdrawal

 

 

1. Recovery from being an accidental addict to benzodiazepines is serious business. It takes time for the central nervous system to heal and for neurotransmitters to stop being sensitive. None of us had the faintest idea that this kind of situation lay in front of us. So we are dealing with shock at what has happened as well as the real physical and mental/emotional symptoms of withdrawal.

 

2. Recovery is not linear, as it is with other illnesses or injuries. If we cut our hands, we can actually see the cut heal and the pain diminish over time. In benzo withdrawal we can be well one day and very sick the next. This is normal and we have to look at our healing differently.

 

3. Recovery is an individual thing, and it is difficult to predict how quickly symptoms will stop for good. People expect to be completely better after a certain period of time, and often get discouraged and depressed when they feel this time has passed and they are not completely better. Most patient support programs tell clients to anticipate 6 months to a year for recovery after a taper has ended. But some people feel better a few months after they stop taking benzos; for others it takes more than a year to feel completely better. Try not to be obsessed with how long it will take, because every day you stay off benzos, your body is healing at its own rate. If you do not follow this particular schedule, it does not mean there is something wrong or you are not healing. Even if you are feeling ill in some respects, other symptoms may disappear. Even people in difficult tapers see improvements in symptoms very early on. So don’t let these time-frames scare you. The way you feel at one month will not be how you will be feeling at three months or at six months.

 

4. It is very typical to have setbacks at different points of time (these times can vary). These setbacks can be so intense that people feel their healing hasn’t happened at all; they feel they have been taken right back to beginning. Setbacks, if they occur, are a normal part of recovery.

 

5. When people are in recovery, they have a lot of fears. One is that they will never get better. Another is that their symptoms are really what they are like — perhaps what they have always been like. Both of these fears are stimulated by benzo withdrawal. In other words they are the thought components of benzo withdrawal, just as insomnia is a physical component.

 

6. There is no way around benzo withdrawal and recovery—you have to go through it. People try all sorts of measures to try to make the pain stop, but nothing can shortcut the process. Our body and brain have their own agenda for healing, and it will take place if you simply accept it.

 

7. When you are having a bad spell, healing is still going on. People typically find that after a bad spell, symptoms improve and often go away forever. Try to remember this when times are hard.

 

8. There is no magic cure to recovery, but you can help yourself by comforting and reassuring yourself as much as possible. Read reassuring information, stay away from stress, ask your partner, family and others for reassurance, and go back to the things you did at the beginning if you are experiencing really tough symptoms.

 

9. When we start to feel better, it is very typical to try to do too much. We are grateful to be alive and we have energy for the first time in weeks or months. But this can be a dangerous time. When we do to much and take on too much too early, it re-sensitizes the nervous system. It doesn’t prevent healing in the long term, but it can make us feel discouraged. So try to pace yourself, even if you are feeling good.

 

10. You do need to respect your body during recovery, although you don’t need to make drastic changes to your lifestyle. Exercise, in any form is critical—even if you can only walk around the house or to the end of the block. Eating well and avoiding all stimulants is crucial. Regular high-protein snacks can help with the shakes and the feelings of weakness we have during withdrawal and recovery.

 

11. Recovery is all about acceptance, but this does not mean passive acceptance. Set small goals for yourself that are achievable. Try to keep exercise happening. Work at your recovery even if that means accepting you are sick—for now. You wouldn’t be hard on yourself if you were in a traffic accident and had injuries; you would work at rehab. Try to take the same attitude and approach to benzodiazepine withdrawal.

 

Yep - you're describing my s/x like you video'd me. 

In acute, just walking to the rest room would make me sweat and my heart pound.

All I could do was lay on the couch - and I would recommend this to anyone suffering. 

You need to heal, and pushing yourself too hard makes the healing take longer.

If you don't feel up to doing anything, then don't.  Rest. Rent movies, watch tv, read, whatever you can to distract from intrusive thoughts.

You WILL feel better soon.  I can just feel it.  This drug wreaks havoc on our body, mind and soul.  But you will survive this and come out the other side a better, happier person!

Dave

Hi Mommyof3, symptoms shifting I think is very common. My symptoms still change regularly. I've had every single symptom you've described and more. It is really scary. For the first year I was terrified. However, as time goes on it gets better. Mine seem to shift every few months but still have minor symptoms that change daily. I've had nerve pain, internal vibrations, and more. I've just learned how to accept it. I've suffered severe mental and physical symptoms. I have had everything checked out through doctors and tests and I'm perfectly fine. We just have to let this run its course unfortunately. Hang in there.

Signature updated. Thank you for all of your responses. It is helpful to read that many of your s/x are similar to mine. I still can't shake the feeling that I am unlike anyone else and won't see recovery. The symptoms are so strong and debilitating. So hard to have hope that this will get better.

 

As you can see from my signature, I have had many bad reactions to medications. I'm not sure if my body became sensitized over the years - or what exactly happened. I regret ever going back to the dr in September to try different meds. What a mistake. If I had only realized then that the physical anxiety symptoms I was suffering over the summer were simply AD withdrawal syndrome and would have cleared up with time. Instead, I though I needed meds again. Clearly my body rejected everything I took. Unfortunately, I didn't listen to my body. I listed to dr's instead, who didn't recognize my symptoms as med related, instead chalking it up to "anxiety".

 

I was so desperate to feel better that I "hoped" they were right - that I just needed to let my body get used to the meds. Instead, I became debilitated - literally. I could not leave my bed, except to be hospitalized twice in four weeks (while on Zoloft and klonopin). Finally the last hospital stay, a cardiologist "diagnosed"  my symptoms as "neurocardiogenic" - from psychotropic drugs.

 

I finally made some subtle improvements after the six weeks of hell ON the meds - and the two weeks of absolutely hellish withdrawal, but again... Subtle.  I am at 3 weeks and 2 days and still suffering slightly lesser degrees of the same awful symptoms.

 

I keep reading all the info on "leaden heaviness", "sensations of heaviness", "heavy limbs", "heavy body".... And I still can't shake the fear about this symptom in particular. It is so terrifying to feel like your body is being sucked into the ground by some strange force. To not have the freedom to move like a normal human being. The tachycardia and exhaustion are terrifying too. Why can't I just  have the more subtle, annoying symptoms rather than these intense, scary, life altering ones that have turned my life upside down (said most of us here, I imagine).

 

I have always had a fair amount of healthy anxiety (minus the years on lexapro when I actually felt peaceful), but my health anxiety is through the roof now with all of these terrible symptoms and sensations going on. Somehow I can't wrap my head around the fact that my symptoms are so severe after such short use.

 

This whole experience has amplified all of my fears and weaknesses. I hate it. It has been a devastating four months.

 

 

Hi Mommyof3, symptoms shifting I think is very common. My symptoms still change regularly. I've had every single symptom you've described and more. It is really scary. For the first year I was terrified. However, as time goes on it gets better. Mine seem to shift every few months but still have minor symptoms that change daily. I've had nerve pain, internal vibrations, and more. I've just learned how to accept it. I've suffered severe mental and physical symptoms. I have had everything checked out through doctors and tests and I'm perfectly fine. We just have to let this run its course unfortunately. Hang in there.

 

Thank you for the encouragement SMS. The very thought of suffering with this for an entire year is terrifying. Ugh. Did your symptoms lessen in intensity within that first year?

SMS, the vibrations... Yes! I've had that too. They shift also. Sometimes in chest/trunk, sometimes in arms, occasionally in legs. That seems to have gotten a bit better, but who knows when it will return. This is such a cruel process.

Hopefully you won't suffer for that long. It sounds like you're better off than I was at your point anyways so that's hopeful. I didn't get the excruciating nerve pain until I think I was 6 months in? I was also on opiates for a long time and polydrugged so I think that's what messed me up so much. For the first year my symptoms didn't really lessen with intensity, they just changed a lot.

 

Like in August-September had internal vibrations sporadically which freaked me out cause I didn't know what they were, then November-December I had severe dr/dp along with head pressure (thought I was loosing my mind and going crazy) then in January I was completely manic and an insomniac (got a lot done that month, had soooooo much energy and was extremely happy and didn't sleep hardly at all), then February I crashed with severe jaw pain and nerve pain and panic attacks with cortisol rushes, then the head pressure and anxiety and depression lingered for awhile up until this last August and everything just all of a sudden lifted and was not as intense. And since August I get flair ups of symptoms but they only last a few days. They're either not as intense or I just handle them better because they don't scare me anymore. In between time I've had a million other symptoms as well but they only last a few weeks or weren't that strong.

 

Either way, I'm fine I'm healthy I'm happy and I live life despite the symptoms I get. Whenever I get symptoms and they start to freak me out I just think well what am I going to do? There's nothing I can do so I just keep going. I'm hopeful for you though so since you don't seem to be that bad. You're starting off with a good baseline it seems like and yours will prob fade over a couple months.

Thanks so much for sharing that with me. If I could shed this horrible heaviness, that would be a huge relief. I think that is my worst symptom so far... Although the tach and palps are no good either. I don't know why it scares me so badly. I have always been very active - never content to just sit around. So being confined has thrown me for a loop. I almost feel that I could deal with the waves of tach better than the lead body and limbs. The random exhaustion is no fun either. I am just praying to get to a point where I can function well - even if I'm not 100% normal. Just to be able to cook dinner, drive to the store, vacuum my living room...

 

I felt sort of ok-ish this afternoon and decided to ride to Marshall's with my mom. I lasted 20 minutes in the store and was completely wiped out - heart pounding, exhaustion, heavy limbs. The level of tiredness is so hard to explain to anyone who hasn't experienced it. I came home, crawled on the couch and laid there while the heaviness and fatigue took over my body again. I cried for an hour.

 

I long for the day where a trip to the store doesn't completely do me in. The irony... My mind needs the distraction. I need the change of scenery. I need the human interaction... But my body can't handle it.

 

I appreciate all of you reaching out to me with your experiences. 

 

 

I feel we have about the same time line with polydrugging. And I'm also a mom!

I would say the first few months were the worst then it got better (could function again, still had sx though) Now i'm in a very very bad wave. But I heared that sometimes after a bad wave some sx disappear for good. So here's to hoping!

 

Thanks Corsair. I thought I was making slight progress between Monday and Thursday of last week, but Friday, Saturday and part of Sunday I felt like I went "backwards". Yesterday (Monday) I had some waves of relief, but some really rough hours as well. Then I was awake all night last night - just laying in bed feeling the heaviness take over again. I also had some tingling in my hands. This morning, I still feel heavy. The intensity waxes and wanes.

 

Honestly, I'm ready to see a neurologist (which scares me to death, as well). The heaviness I'm feeling is so scary and I'm just not sure if it's really from the meds or something else. I can't stand it much longer. I feel completely disabled by it. It's terrifying me. I don't understand the physiology behind this. Why in the world are my arms like lead and my body and legs too most of the time? I really expected this "symptom" to lift by now. I'm feeling so discouraged and completely upset by it.

Thanks Corsair. I thought I was making slight progress between Monday and Thursday of last week, but Friday, Saturday and part of Sunday I felt like I went "backwards". Yesterday (Monday) I had some waves of relief, but some really rough hours as well. Then I was awake all night last night - just laying in bed feeling the heaviness take over again. I also had some tingling in my hands. This morning, I still feel heavy. The intensity waxes and wanes.

 

Honestly, I'm ready to see a neurologist (which scares me to death, as well). The heaviness I'm feeling is so scary and I'm just not sure if it's really from the meds or something else. I can't stand it much longer. I feel completely disabled by it. It's terrifying me. I don't understand the physiology behind this. Why in the world are my arms like lead and my body and legs too most of the time? I really expected this "symptom" to lift by now. I'm feeling so discouraged and completely upset by it.

 

Your CNS controls everything from movement to feeling. So it seems logical. I could not walk upright today because my shoulders are too heavy. I did have MRI's, scans, ... like most people here and it was fine.

But getting checked out never hurts if you are really scared. Sometimes the confirmation it's withdrawal can take the anxiety away on its own.

Is there a update on how you're doing? The. Numbness, heavy limbs and body sensations are what I'm dealing with. Just wondering if you've gotten any better

How would you describe the heaviness? I have something I describe as heaviness but not sure if it’s the same. It’s this caustic gnawing toothache in my body that flares bad when I do things and everything feels so heavy. Like I have been poisoned and these is toxic sludge in my veins. It almost itches and burns.