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Lloyd: Effexor withdrawal - 2 months in

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Lloyd

Am getting feverish chills frequently now. Last night was pretty bad, have never felt like that before. Basically a strange feeling and a feverish chill with electric shocks in the head and prickling on the skin. Sometimes i feel like i'm loosing my mind and going to crazy and not know who i am anymore. Really worried now.

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ChessieCat

You might be getting acold or flu.  Another member recently mentioned getting brain zaps when sick.

 

brain-zaps-during-after-a-virus

 

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Lloyd

I get the feverish chills pretty much most days and i have a whole body tingling / numbness / flushed sensation pretty much most of the time. Just never experienced it as intense as last night.If i could imagine someone withdrawing from opiates would experience something like this except i literally have taken nothing for a year.

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ChessieCat
4 minutes ago, Lloyd said:

i literally have taken nothing for a year.

 

So you have finished with Effexor?  Please update your signature with the information.  Account Settings – Create or Edit a signature

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SDOE

Lloyd,

I hope you keep updating on your reinstatement.  I haven't taken Cymbalta since Jan 2019, but I think about reinstating.  My main problem is insomnia; waking up pretty much every night for hours. I cannot live a normal life. Doesn't seem to be getting better yet I'm afraid of reinstating Cymbalta while I'm not stable. 

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SDOE

Sorry Lloyd after looking back over posts it looks like you were thinking reinstating.

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Lloyd

So something odd ive observed. I suffer from the swirling head pressure neck pain and headaches pretty much all the time. But ive found if i start singing it usually gets rid of the head pressure and the headaches at least for a little while.

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Lloyd

Had a dentist appointment today to get a filling done. Was a bit nervous about the local anasthetic if it would cause any problems. Seemed to be fine apart from feeling a little tired afterwards. They used Lidocaine.

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DogLover

Hey fren!!! Good luck with the teeths!

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Lloyd

Well i finally have my first appointment with the Neurologist coming up at the end of this month. Its been 22 months now since i stopped the Effexor. My doctor referred me as he suspects MS or another neurological disorder. There are telltale signs of neurological damage including Nystagmus (uncontrolled eye movements). I pretty much tick all the boxes for Akathasia, Anxiety, Discontinuation syndrome & MS. I don't really know what to think anymore to be honest. I'm just tired of waiting for things to get better. I wanted to give myself 2 years off the medications to see if i improve. There are some improvements psychologically but i have a feeling ive just learnt to tolerate this condition better. Or maybe i just hide it from others better.

I'm hoping for some answers from the Neurologist. It's the last port of call for any hope of medical science shedding some light on it. Not knowing what's happening to me has been the hardest thing to deal with. Does this just keep getting worse until i can't tolerate it anymore. I have a family counting on me to work and pay the bills. I can't imagine not being there for them but it scares the sh*t out of me wondering whats going to happen to me. I'm not going to top myself but i can see how a person could be driven to it. Dealing with it every day for such a long time is exhausting. I'm sick of dealing with medical 'professionals' completely ignorant to the damage caused by these drugs. I never went back to the mental health service. I have never felt so humiliated and discarded in my life when i saw them. Completely dismissed everything i was telling them.

2 years is what i told myself. If i haven't seen decent improvement & the neurologist can't shed any light on it i'm going to have to go back on. At that point i'm pretty much stuck on them for good and i run the risk of even worse problems down the track.

I'm writing my thoughts down here in the hope one day i can look back on this and it will be a distant memory that i can reflect on.

 

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SDOE

Lloyd it is very stressful dealing with medical issues; sorry you have to deal with these symptoms.  I follow your progress because we are both long time users of SNRIs.  Just googling your symptoms and I wonder about a vitamin deficiency of some sort (such as B1, B6, B12.)  Hopefully, blood work is being done to rule out those possible causes.

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India
9 hours ago, Lloyd said:

My doctor referred me as he suspects MS or another neurological disorder.

@Lloyd I share your sentiments. It’s been 16 months since I cted. I reinstated so I am still on 5mg . Small improvements but I worry about the lobotomised head feeling and zero inability to carry out cognitive tasks. Loss of intellectual abilities.

i would really like to know what others suggest here for you Lloyd. I too have neurology appointment looming. I don’t expect much. 

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Alanmane
21 hours ago, India said:

@Lloyd  Comparto tus sentimientos. Han pasado 16 meses desde que cté. Restablecí, así que todavía estoy en 5mg. Pequeñas mejoras, pero me preocupa la sensación de cabeza lobotomizada y la incapacidad cero para llevar a cabo tareas cognitivas. Pérdida de habilidades intelectuales.

Realmente me gustaría saber lo que otros sugieren aquí para ti, Lloyd. Yo también tengo una cita de neurología inminente. No espero mucho 

I just write to encourage and say that sometimes everything changes for the better in a short time. I also feel lobotomized after months reducing effexor, I hardly think about my state anymore because it doesn't help me. I know that it is possible that everything improves with time and I do not know if it lacks internal dialogue and hardly think anything (blank mind), it is a neurological damage caused by effexor. I doubt that any doctor can say that this is the case or not. Regards

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Lloyd

@India @Alanmane @SDOE Thanks for checking in 😃

 

That lobotomized feeling disappears pretty quickly when re-instating. First time around when i was off Effexor for 1.5 years i reinstated at 37.5mg. Brain fog dissipated quickly along with the other issues. Side effect was feeling dreamy and a bit numb. I wasn't in as bad withdrawal as i am now though so not sure how i would go doing that again.

I try not to think about withdrawal too much but its definitely consumed a very large amount of thought time over the last 2 years. Had the icy cold chills all over the body again last night. Think it was exacerbated by stress from yesterday.

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Lloyd

@India Hiya. Vertigo has started getting worse last few weeks. Just waiting to see the neurologist later this month to see if they can shed any light on the problems i have been having. I have constant pressure and pain coming from the side of my head. Pretty worried that something serious is going on. Also have really high blood pressure. Pretty much constantly 130+/80+. Sometimes goes a little lower. I don't think i can keep off medication all together much longer. At the least i'm going to have to take blood pressure medication otherwise i'm putting myself at risk of heart disease, stroke etc. Its now been 23 months since i stopped Effexor. How are you going?

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Lloyd

Seeking some advice. My blood pressure is pretty bad. It's constantly 130 / 80 + and spikes erratically. My farther died of heart failure years ago so there's a real risk of family history. The stress of the withdrawal is putting allot of pressure on my heart and i have niggling chest pain pretty much all the time now. Short of breath and difficulty exercising. I also have Akathasia to some extent - the feeling of constant inner restlessness and tightness which is quite disturbing but not as intense as what others here have described. This along with anxiety is not a good combination for my health and i feel that if i don't address it and just let it keep going on then i'm putting myself at risk of an early death.

I don't really want to go back on the Effexor if i can help it and using Benzos is probably asking for trouble, but i'm nearing the point that i need to act. 

 

I'm thinking of asking my doctor about prescribing propranolol to help manage Anxiety, Blood pressure, Akathasia and the headaches. From what i can tell the side effects are allot less and it doesn't seem to be as big a risk as going back on the Effexor. 

 

I'm interested to know if any members here have much experience with propranolol and if they also have / had Akathasia and if it helped with it during withdrawal. I know this a forum for people trying to get off medications but i'm looking for a lesser evil to help manage the withdrawal and eventually being able to be drug free and functioning.

 

Also would love to hear from other members that have had Akathasia and seen it diminish or disapear over time.

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Lloyd

Well had my neurologist appointment today after months of waiting. He confirmed that MS isn't present which is a relief. He reviewed the MRI images from last year which shows that i have an elongated cerebellum (4mm) also known as Chiari Malformation. He didn't seem to think that this would cause any issues but i just looked up the symptom list and they match exactly what i'm experiencing. I get headaches when coughing or sneezing, dizziness, tinnitus and a number of other symptoms on the list.

I'm going to call them back tomorrow about it because i think its worth some investigation.

 

He's also prescribed propanolol to help with managing the effects of anxiety. Not sure if i'm going to take it yet.

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India
21 hours ago, Lloyd said:

Well had my neurologist appointment today after months of waiting. He confirmed that MS isn't present which is a relief. He reviewed the MRI images from last year which shows that i have an elongated cerebellum (4mm) also known as Chiari Malformation. He didn't seem to think that this would cause any issues but i just looked up the symptom list and they match exactly what i'm experiencing. I get headaches when coughing or sneezing, dizziness, tinnitus and a number of other symptoms on the list.

I'm going to call them back tomorrow about it because i think its worth some investigation.

 

He's also prescribed propanolol to help with managing the effects of anxiety. Not sure if i'm going to take it yet.

@Lloyd Are you in UK? Coincidentally, I had my  first neurology appointment here in London yesterday. MRI with constraint ordered for January/February. Did you have contrast?

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Lloyd

@India Hiya. Nope in Australia. Is this your first MRI / did the doctor order it?  I called back the Neurologist but he doesn't get back until next week so they have left a message for him to call me. Going to ask for the cine MRI which is like a video of the cerebral fluid from the spine flowing into the skull. The brain is supposed to be bathed in it and it causes issues and quite a few symptoms if its the issue. Would explain allot of the symptoms.

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Lloyd

Well here i am. Its been 2 years since i stopped taking the Effexor. I said i would give myself 2 years off the medication & see how i went. I white knuckled it through some god awful sh*t and i honestly can't believe i still have a marriage and a job. Its been a bit of a blur to be honest and i hope one day its all just a bad memory that fades.

 

I can report some improvement in the following areas though.

 

Akathasia - has reduced by a bit, i'm less fidgety than before but i still have the inner restlessness just not as bad.

Anxiety / Fear - I stress less about my OCD fear. Maybe i just don't care as much because i'm so tired.

Weight - I'm back at a healthy weight (80kg) after 2 years.

Burning face - Much less these days almost entirely unnoticeable.

Social anxiety - Has lessened a little but i am pushing myself harder into uncomfortable situations to try to adjust to this more.

Tinnitus - has lessened up.

Emotional control - Improved a bit.

Hyper sexuality - Sex drive has slowed down a little.

 

Things that are still problematic in addition to whats improved.

 

Concentration & brain fog.

Balance issues / dizziness.

Vision - nystagmus, blurring & derealization.

Fizzing & tingling in limbs / body.

Loss of motivation & depressed.

Heart problems - flutters, tightness, shortness of breath.

Headaches / neck pain - almost daily.

Migraines.

 

There's probably a few symptoms ive missed but i don't want to dwell on them to be honest. I think the less attention we pay to the symptoms the better otherwise they take on a life of their own and become a monster in our minds making the anxiety & fear worse.

The concentration / brain fog, akathasia & derealization / eye problems are the major problems for me. If i didn't have those everything else would be tolerable.

These are symptoms that i think i wont be able to tolerate worsening of and or permanently.

 

I have an appointment with a neuro surgeon in March to further investigate my Chiari malformation & see if its contributing to the headaches & neck pain. The neurologist wasn't much of a help i'm afraid. I'm just holding out hope that there's something else contributing that can be fixed.

I loathe telling doctors about discontinuation syndrome. All my problems are just instantly dismissed and blamed on anxiety & mental health. No-one wants to admit that these drugs could do so much harm. Its just easier to blame the victim instead.

 

I don't know what's in store for me over the next year but i hope i see some major improvements.

 

 

 

 

 

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Lloyd

Its been a while since i updated my thread so here is an update.

 

Work & COVID19 have pretty much been consuming me as of late. I know the COVID19 virus is causing allot of stress for plenty of us here already dealing with the fallout of anti-depressant use & discontinuation / tapering. My stress levels are far too high & have been for the last few years since quitting Effexor. It's like how much can you wind up a spring before it snaps. My doctor suspects heart problems (i'm 35) and i would guarantee that the stress of discontinuation syndrome these past few years has caused taken its toll on me physically as-well as mentally. I have an appointment in 2 months to have my heart checked out but that's in doubt seeing as health services are going to be virtually inaccessible due to COVID19. I still suffer from numerous neurological & physcological side effects and these seem to change every now and again. The realization is that i am not well. I'm not sure if i will be able to make it through the next 6 months when our government is talking about long term isolation for all its citizens now - the situation has made me feel very ill the last few weeks. If it comes down to it i will have to start medication again because i have a family that relies on me and they are more important than myself and my long term health. I hope it doesn't backfire and make things worse because there's only so much a person can endure and if medication fails after waiting years to get better there's really only escape left.

 

The worlds gone literally mad in the past few weeks. The supermarkets are now an urban battle zone, governments are exercising total control & people are behaving unpredictably.

I'm lucky that i'm located rural on acreage and we can remove ourselves from society & isolate. Have gotten fridges & freezers stocked, hunting supplies, fruit trees & veggie patches, rainwater etc. Got solar systems and fridges that run from them. I honestly think our society is on the verge of collapse and that it will devolve into something along the lines of Mad Max. Some work colleagues and friends think i'm silly for prepping but i wont let me & my family be caught out.

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Altostrata

Hello, Lloyd, thanks for checking in.

 

You are doing the best to protect yourself and your family, please give yourself credit for that.

 

It also sounds like you have a tendency to worry that might be amplifying whatever PAWS you might be suffering. You are also in an excellent position to learn some stress and anxiety-reducing methods, being somewhat removed from civilization. These can help you relax and get by without drugs.

 

See

 

Non-drug techniques to cope with emotional symptoms

 

Easing your way into meditation for a stressed-out nervous system

 

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

 

Ways to cope with daily anxiety

 

Shame, guilt, regret, and self-criticism

 

Health anxiety, hypochondria, and obsession with symptoms

 

Coping with irritation, anger and rage

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Lloyd
Posted (edited)

Time for an update, it's been a while. And i guess its been more that 2.5 years off the Effexor now.

 

I'm off to see the neurosurgeon on Tuesday to investigate the cause of my issues as some of them may be related to a 4mm protusion of the cerebellum tonsils into the neck which was picked up on a head MRI back in 2018. Allot of my symptoms are also consistent with a Chiari malformation including Ataxia, nystagmus, choking feel all the time, neck pain and headaches, triganeuralgia, constant balance issues, vision problems, tinnitus etc. They are also consistent with withdrawl which makes things complicated. They can run a CINE MRI to determine if theres an issue with CSF fluid flow obstruction and to also see if a syrinx has formed in the neck.

 

I'm actually hoping they find that it's causing allot of the issues because at least then i can have surgery which generally results in improvements of symptoms. Then atleast some part of this hell will be over and done with.

 

The anxiety these day's is pretty bad and i have had enough of the background Akathasia. I haven't had a full blown panic attack yet but it doesn't feel far off. Not everything is bad, i still have a loving wife, my daughter and a job which i am very grateful as it's what keeps me going on.

 

Edited by Altostrata
removed spaces

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Altostrata

Have there been any changes in your symptoms over the last 6 months?

 

Yes, it may be difficult to distinguish between withdrawal symptoms and a neurophysiological problem. Please let us know the results of the tests.

 

Have you tried fish oil and magnesium supplements. See
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Many find them helpful. You might try a little bit of one at a time to see how it affects you.

 

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Lloyd

Hi Alto, thanks for checking. Hope you are travelling well in these times. I appreaciate the time you take to reply!

 

Symptoms that have degraded over the last six months include: Vison, tinnitus, Diziness - Feels like walking on a ship all the time, vision problems - Nystagmus, blurred / strained vision, Neck pain & choking feeling, drunk feeling / nausea - Ataxia?, trouble with hand writing. I used the fish oil a fair bit when i was experiencing the worst of the brain zaps back in 2018 / 2019 but don't take it much now as i feel really hot and flushed after taking it. Magnesium seems to have mixed results for me. Sometimes it helps other times i just feel anxious about taking it and it makes my anxiety worse.

 

The last time i saw a neurologist the moment i mentioned my anxiety he palmed everything off onto it & didn't want to do any further investigation. This time i won't mention it unless it comes up. Just hoping the new neurologist will order an additional CINE MRI / Neck CT or MRI to confirm (or not) if there is an issue. The scans should definently show one way or the other.

 

When i had a MRI done in 2018 the doctor who ordered it failed to mention the cerbellum extension below the foramen magnum from the radiologist's reports. The Neurologist i saw mid 2019 mentioned it off hand which is how i found out about it. He didn't seem to think it was an issue because it was only 4mm long and he thinks that it needs to be atleast 5mm long to cause issues. I did some reading afterwards and there were plenty of documented scientific papares with reports of 2-3mm malformations causing these types of issues. I wasn't happy about the last visit with the neurologist as he dimissed everything as Anxiety related and didn't bother to do any additional investigation.

Also i now keep a record of all my scans and make sure i read the radiologist reports now after this not being mentioned to me until a year after the scan was done.

 

From my readings there are some tell tale signs that strongly points towards this being a Chiari problem.

 

I have confirmed scoliosis in the neck from a scan done in 2018.

Nausea.

Difficulty speaking / swallowing.

Nystagmus - Only caused by neurological problems and can't be 'faked' Other vision problems too.

Tinnitus

Triganeuralgia - head pressure / pain in jaw etc.

Ataxia like symptoms

Neck pain / discomfort.

Choking feeling.

Tingling / numbness in extermitys

Symptoms worse after eating - This has been a MAJOR problems for me for many years.

Instant headache when coughing, bending over or physical exercise such as jogging / running.

Passing out feeling if laughing.

 

I'll post another update after Tuesday's appointment with the Neuro.

 

 

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Lloyd

@Altostrata Just got back from my appointment with the Neurosurgeon. He has ordered a new MRI on both head & neck. Apparently the last one i had was done on a low powered MRI machine which doesn't produce useful images for diagnosing the type of neurological problems he suspects. So its off to have a MRI on a 3 Tesla (power rating) MRI machine on July 6th. He had a similar age patient with very similiar symptoms - i can't remember what he said it ended up being but it was a midbrain problem and was only picked up on a more powerful MRI scan.

He confirmed the symptoms i'm presenting with are neurological in nature (not anxiety) and want's to do further diagnosis to determine the cause. He suspects an issue with the midbrain especially after i mentioned a head trauma from my teen years and when all my issues started immedietley after. Another test he got me to do was poke my tounge out. I never realised my head would bob up & down uncontrollably which apparently is another strong inidcator of neurological problems.

 

He mentioned that he observed both INO Syndrome & Dystonia symptoms. I also mentioned that my symptoms became significantly worse after stopping Effexor. He mentioned that he has had a number of patients in the past whose neurological symptoms have worsened after stopping SSRI's which was interesting and that INO pathways are strongly affected by serotnin.

 

There were some other notes on the MRI order form but for the life of me i can't read them! The scan is also going to look at the Chiari and check for proper CSF Flow & the presence of a Syrinx.

Happy with the consult today, he took me seriously and didn't fob it off on mental health problems like the last neurologist. Hopefully i have some answers by July 20th when the follow up consult is.

 

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Altostrata

You have done the work to be an informed patient and it sounds like you have found a good neurologist. I am optimistic you will get good care.

 

15 hours ago, Lloyd said:

I also mentioned that my symptoms became significantly worse after stopping Effexor. He mentioned that he has had a number of patients in the past whose neurological symptoms have worsened after stopping SSRI's

 

It's a good sign he's been this observant, whether serotonin has anything to do with it or not.

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Lloyd

Time for an update.

 

I had an MRI done on head & neck in a 3.0 Tesla machine. Last one i had on my head in 2018 was on a 1.5 Tesla machine. Anxiety was terrible during the scan and i wanted nothing more then to get out of the machine but i just stuck through it until it was done almost an hour later.

 

Had a neurologist appointment in the evening same day. The radiologist report hadn't come back at that point but we talked allot about the pattern of my headaches. Usually exercise (jogging) or getting up quick or other actions causes a headache for me. The last MRI i had in 2018 showed that my cerbellum tonsils were hanging 4mm below the foreman magnum. Strangly on this MRI they appeared as normal and not low hanging below the base of the opening in the skull.

Apparently the only known cause for the position of the cerebellum to change is due to low volume / pressure CSF fluid - causes the brain to sag and the tonsils hang lower. They now strongly suspect that i have a CSF fluid leak from a rupture in the CSF sack somewhere along my spine.

This makes allot of sense seeing as i never suffered from headaches until i had a chiro appointment a few years back who did an unusual manipulation on my upper back that did not feel right at all and caused pain - he even said he 'wanted to try something' that was not normally done when he did it. Ever since that day i instantly suffered headaches brought on by activities such as swinging an axe. It's highly likely that a rupture occured and ive been living with it since.

He said he would compare scans with my previous MRI from 2018 and consult with another specialist to confirm it but said it's quite likely low CSF volume / pressure due to a CSF leak. I'm actually hoping that it is because it's something that can be operated on and fixed and it feels like a way forward and out of this misery.

 

Symptons of low CSF volume / pressure are consistent with allot of my current symptoms - i have all of these symptoms. Parkinisom slightly only when its bad.

 

Neck or interscapular pain.

Tinnitus, change in hearing and dizziness.

Nausea and emesis.

Gait unsteadiness.

Diplopia.

Trouble with memory or cognitive function.

Movement disorders, such as chorea or parkinsonism.

 

I don't think its the cause of all of my current problems as i still have the effexor withdrawl and severe anxiety. But atleast it would explain a significant number of the ongoing issues ive been having.

Next steps from what i can see is a nasal swab is done to confirm the presence of B proteins related to a CSF leak. Then if confirmed its a CT scan with a contrast radioactive dye injected into the CSF sack to determine where the leak is. Once that's done and the location of the leak is confirmed then they will be able to operate and seal the point of rupture. Symptoms should allevaite after that.

 

The radioloist report isn't out yet so i don't know if there are any other findings on the MRI report. I did see the images and they were amazing in detail, resolution and clarity. Much better than the scan i had done on the 1.5 tesla machine. Follow up with the neurosurgeon is on the 20th July but i should hear back from the neurologist before then on next steps.

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Altostrata
8 hours ago, Lloyd said:

i have a CSF fluid leak from a rupture in the CSF sack somewhere along my spine.

This makes allot of sense seeing as i never suffered from headaches until i had a chiro appointment a few years back

 

That is unfortunate. Can it be corrected?

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Lloyd

@Altostrata Yes corrective surgery is available to repair tears in the Dura. From what i can gather the corrective surgery should alleviate the symptoms associated with low CSF volume / pressure. Next step test's will confirm the presence of a tear - just waiting to hear back from the neurologist / neurosurgeon if they want to have the additional test / scan done to look for a tear. Still haven't seen the radiologist result of the MRI so not sure if there's anything else they want to investigate.

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Lloyd

Time for another update & something interesting.

 

Spoke with the neuro surgeon and he's advised that the radiologosit located a cystic like focus 11 / 6 / 4 mm (possibly rathkes cleft cyst) / and calcification of the pituitary gland. I have had blood tests done for pituitary gland hormones to diagnose pituitary gland dysfunction. Just waiting on the results now. Depending on the outcome of the results i might have some answers to part of my issues. Anxiety, diziness and vision problems have been getting worse...

 

As for the CSF issue, the neurologist believes that the low lying cerebellar tonsils reported in my MRI in 2018 were mis-reported as the scan was misinterpreted??? Not sure what that means but the new MRI scan didn't find any CSF related issues.

 

Now something more interesting. I wanted to have a look at the cystic like focus a bit closer in details from the MRI. It can be seen in the images but doesn't really give a good sense of volume etc. 

Had some spare time and the MRI images taken on the 3.0 Telsa machine were quite good quality. Have been able to create a reconstructed 3D model of my brain which is incredibly detailed. Used the DICOM study files and a T2 sagittal set of 176 slices to create the axial & coronial planes. With this then converted into a 3D model of my head, select soft tissue and voila a 3D image of the brain. Needs some clean up and additional tuning but it's turned out really well. Once it's cleaned up i should be able to inspect the cyst closer in 3D.

 

unknown.png

 

 

 

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Lloyd

Got the results back from the blood tests. All normal. Typical. Cortisol levels fine, ACTH fine etc.

 

Was hoping that there would be a problem so atleast it's something that can be explained and dealt with. Feeling pretty down now about it, just want this nightmare to end and just for ONCE feel 'normal'. Its been a long time since ive felt normal. Not really sure what to do now. Keep waiting for things to improve or just go back on drugs and pray to god it works. Virtually impossible to get any recognition from the medical proffesion of the impact Effexor XR and Pramipexole have had on me.

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