Alan1234: desperately seeking help

[Alan1234]

28 minutes ago, Rosetta said:

Please look at the box and see if the drug is extended release or regular Venlafaxine and let us know.

It’s extended release mini tablets inside capsules. 
 

they can be crushed, I don’t have a scale, I can try and make a liquid 

[Alan1234]

13 minutes ago, Faure said:

Is it worth tagging a mod who has commented before for advice? I think they respond pretty fast if they are tagged….

I will try Faure 

[Alan1234]

On 11/21/2021 at 5:26 PM, Anna42 said:

@Alan1234Hey, i am not a mod and know nothing about the hell you are in but can offer some emotional support if you want any. You are not alone, a lot of people here care about you and want you to recover. If all i wrote seems like platitudes, that is fine too, you are healing, all emotions are healthy

Thank you 

[Anna42]

You are welcome! @Alan1234

[Alan1234]

1 minute ago, Alan1234 said:

On 11/21/2021 at 4:41 PM, Rosetta said:

All right, I did not remember that about Vortiotexitine affecting you that way.  Scary.
 

As much as I dislike Venlafaxine, you are no longer suicidal, and that is most important.  Therefore, I would stay at 12.5.  After all that’s what you were taking in May of 2020 when you CTed.  Maybe your body needs a little bit of it.  
 

You have no idea how lucky you are that your SI went away.  Risking going back to being suicidal is not a good idea, right?  You might make more mistakes after that.  If it does come back and is too frequent or intense, you could think about what to do then.  So, in the interest of stabilization, I think Venlafaxine is not a bad option.  I was hoping Vortiotexitine was a better option, but clearly not.  In light of that, please don’t reduce your dose.
 

Your signature says 25 mg, but you are taking only one of the tiny pills inside the capsule, correct?  You should fix that on your signature.

 

If you stay at 12.5 and try to stabilize, the Mods will eventually get around to your thread.  Also, do this: keep notes on when you take your dose, how much you take, and how you feel afterward throughout the day.  Keep them on paper.  The mods might ask you for them sometime, and if you are in the habit of doing that, it will be good.
 

As for tapering later, there are Effexor/Venlafaxine capsules that have little beads in them.  You would not need a scale.  People count the beads, and taper that way.

Expand  

@Altostrata 
hi I hope you are well.

could you possibly comment on if i should reduce my dose of Venlafaxine in relation to my new symptoms and continuing symptoms as discussed with @Rosetta in the recent posts 

 

thank you 

[Alan1234]

26 minutes ago, Alan1234 said:

It’s extended release mini tablets inside capsules. 
 

they can be crushed, I don’t have a scale, I can try and make a liquid 

i crushed a tablet but I can’t make a liquid. Small part of the tablet although flat are like flakes and won’t break up or desolve in liquid. Also a lot of the powder sinks to the bottom and won’t stay suspended or dessolve in the liquid.

 

I will have to use a pill cutter for the time being and cut the mini tablet in half and possibly quarters if able until I can get a new prescription for a beaded version 

[DebM]

Hi Alan,

 

I can't seem to figure out how to respond directly to your reply. However, I want to say hope is essential to my staying on track. This experience is so very scary. I bet you may notice that there are times of the day when with variable symptoms some moments are better than others. I rated moments from 1-10, with 10 the highest severity. I am comforted to note that not all moments are 10's. I found hope in reminding myself that the variability was on my side when bad moments were present, as I knew over time they would subside. 

 

I hold hope for you. I imagine this  entire online community holds hope for you. If you can, as best you can, maybe take one deep breath in simply saying to yourself ... "hope". 

 

I told my husband many times, no person deserves to go through this experience!! 

May you experience some moments of hope and peace. 

Deb

[Rosetta]

If you cut the pills you might get very different doses each day.  That would be very hard on your system.   Hopefully, you can get capsules with beads in them right away.
 

You don’t have a mortar and pestle, I suppose.  Maybe you could get a set?  You could crush it and then try to divide the powder in half, but, of course, it would be better with a scale.

 

 

It might be better to take the 12.5 mg until you get the beads.  Every change causes damage.  The fewer changes the better.  Going down by just 10 percent might mitigate your symptoms.

[Alan1234]

7 hours ago, DebM said:

Hi Alan,

 

I can't seem to figure out how to respond directly to your reply. However, I want to say hope is essential to my staying on track. This experience is so very scary. I bet you may notice that there are times of the day when with variable symptoms some moments are better than others. I rated moments from 1-10, with 10 the highest severity. I am comforted to note that not all moments are 10's. I found hope in reminding myself that the variability was on my side when bad moments were present, as I knew over time they would subside. 

 

I hold hope for you. I imagine this  entire online community holds hope for you. If you can, as best you can, maybe take one deep breath in simply saying to yourself ... "hope". 

 

I told my husband many times, no person deserves to go through this experience!! 

May you experience some moments of hope and peace. 

Deb

Hi Deb

thank you for your message. 
yes i need to see hope and constantly im looking for it. Your exactly right no person deserves to go through this. It’s so frustrating as I’m sure it’s so much worse by how I came off these meds but I trusted my doctors blindly.

 

ive since realised they were prescribing me 75mg Instant release Venalafaxine once per day for 4yrs. Again I never knew it shouldn’t be prescribed like this. I’m not in a rationale mind but it’s cost me a successful career, my house, the strain has caused me to lose my wife and family as im too much to be around as I need someone to look after me. I seriously don’t know if I should consider litigation against my doctor for prescribing the drug wrongly. I’m sure it was a genuine mistake though and that won’t change anything but the money would help my family. I suppose this is the anger and frustration talking.

 

God bless 

 

Adam 

[Alan1234]

1 hour ago, Rosetta said:

If you cut the pills you might get very different doses each day.  That would be very hard on your system.   Hopefully, you can get capsules with beads in them right away.
 

You don’t have a mortar and pestle, I suppose.  Maybe you could get a set?  You could crush it and then try to divide the powder in half, but, of course, it would be better with a scale.

 

 

It might be better to take the 12.5 mg until you get the beads.  Every change causes damage.  The fewer changes the better.  Going down by just 10 percent might mitigate your symptoms.

I’ve managed to get in with my doctor today but it might take a couple of days to get beaded medication. 
 

I don’t have a pestle and mortar, but I’m sure they are easy to order off Amazon. I feel that’s there’s bits of the pills that wouldn’t break into a powder however, they are behave distinctly different when crushed. They go into flat flakes and won’t disintegrate like they are bound together with something like a resin or fibres. The flakes are much less than a millimetre think but can be quite a few millimetres wide. I doubt a mortar and pestle will suffice. Yes I’m awaiting a scale but I can’t get this for at least two weeks for delivery. I don’t want to spend that long on this dose because of the side affects. I will look to make tiny changes and try 3/4 of a crushed tablet divided into two doses of 4.5mg. I think this is the smallest dose I can make until either hopefully my doctor gives me beads or I get a scale.  I’m concerned that if I tell my doctor about the sides he will abruptly stop the medication. 
 

 

[Alan1234]

Yesterday symptom dairy 

Anxiety and Tinnitus was high and constant all day.

ive added times when it was severe 

 

7:00 am calf cramp all day, restless legs, urinate

7:45 urinate 

8:00 Breakfast, 6mg Venlafaxine 

8.45 urinate

9.00 anxiety raising heart 

9:20 urinate

10:00 urinate, dry mouth 

10:30 urinate anxiety racing

10:40 mediate outside 

11:00 funny taste in mouth, Jaw clenching mild 

11:28 high anxiety found lumps in shin 

12:00 urinate 

12:00 anxiety decreased some 

12:10 shower

12:25 anxiety spike thought of going out

12:40 extreme health anxiety worried about getting another scan

12:45 lunch 

12:45 extreme anxiety 

13:30 urinate 

13:55 urinate 

14:10 urinate 

14:10 left leg faciacilations cont

15:30 urinate 

16:18 Urinate 

17:15 Urinate 

18:00 Dinner 

18:40 Urinate

19:00 6mg Venlafaxine

19:40 Urinate, breathless, anxiety, heart rate, Dry mouth, jaw clenching less, shaky legs 

21:40 urinate, anxiety high, tinnitus high, heart racing 

22:00 Bed, meditate 

22:30 urinate 

23:06 urinate 

23:06 high tinnitus 

00:30 urinate, tinnitus, sleep

03:30 urinate, sleep

04:30 urinate, sleep

5:15 restlessness

6:30 tinnitus worsening, calf’s restless, cramps, anxiety high, breathless

7:00 urinate

7:45 Urinate 

8:20 breakfast

 

 

Edited November 27, 2021 by ChessieCat
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[Alan1234]

4 hours ago, Rosetta said:

If you cut the pills you might get very different doses each day.  That would be very hard on your system.   Hopefully, you can get capsules with beads in them right away.
 

You don’t have a mortar and pestle, I suppose.  Maybe you could get a set?  You could crush it and then try to divide the powder in half, but, of course, it would be better with a scale.

 

 

It might be better to take the 12.5 mg until you get the beads.  Every change causes damage.  The fewer changes the better.  Going down by just 10 percent might mitigate your symptoms.

I’ve been in touch with my Doctor and pharmacist and they aren’t much help even though nice they say they can’t help me.

 

My GP has prescribed 37.5mg but says he has no idea what brands have beads inside because there are so many and that he doesn’t write the brand on the prescription. He is sympathetic about the reason and said I need to discuss with pharmacist.  
 

I have discussed with pharmacist and they said they are staffed by Locum pharmacist. I spoke to them and they said they have no idea if a brand contains mini tablets or beads inside and they can’t find out. They also said they can’t guarantee that I will always get the same brand or product but only the same dose and delivery IR/ER. They said this is because there medications all come from a wholesaler who just sends them the dose and delivery and it could be a different brand as it just depends on what they have in. They say they can never guarantee same brand. I’m house bound at present because of my bladder and this pharmacy will deliver the medication. I guess I’m going to have to wait until I get the scales to do any smaller tapers 

[Alan1234]

5 hours ago, Rosetta said:

If you cut the pills you might get very different doses each day.  That would be very hard on your system.   Hopefully, you can get capsules with beads in them right away.
 

You don’t have a mortar and pestle, I suppose.  Maybe you could get a set?  You could crush it and then try to divide the powder in half, but, of course, it would be better with a scale.

 

 

It might be better to take the 12.5 mg until you get the beads.  Every change causes damage.  The fewer changes the better.  Going down by just 10 percent might mitigate your symptoms.

My urination frequency  is going through the roof. These medications have clearly made it worse. Fast tapers aren’t going to be good for me but the equally I need to balance it with my bladder as that is what is making me housebound.

[Rosetta]

I’m sorry, Alan.  With that sort of “help” from your pharmacist and doctor I would feel that I could not afford to get hooked on Venlafaxine!  You have taken it since Nov 16th.  Today is the 24th.  If I were you I would stop.

 

I realize you have some dependency to Venlafaxine from over a year ago, but the muscle contractions are too concerning.  When I agreed with you that you could be dependent on Vortioxetine’s serotonin effects, and therefore you were afraid to stop Venlafaxine’s serotonin action, I did not anticipate being unable to get Ven with beads in the capsules!
 

1. Once you are hooked on this formulation of Venlafaxine, the XR versión, switching to beads will be rocky because it will be switching from XR to non-XR.  Every change is going to increase your dysautonomia condition.  The switch will be a change.  I would feel that I could ill afford that.

 

2.  You can’t even get the beads in order to taper.  If I couldn’t get the form of Ven that has beads, in your condition, I couldn’t taper.  Rhiannon tapered Effexor by dry cutting.  She used a scale that costs about $40 US.  As far as dissolving the drug, you could stir the mixture of water up so that the powder is swirling around quite well and pour off your dose.  Then, you could swirl that amount up really well and drink it fast.  People do this, but I keep coming back to the fact that you have been taking Ven only 9 days, and I would not feel that getting hooked by trying to taper — in an unsatisfactory fashion at that — made sense.
 

3. I know that it’s scary to stop, but it’s scarier, to me, for you to get hooked on Venlafaxine again.  Venlafaxine,  given it’s affect on Nortriptyline, makes no sense as you have not taken it long enough to become dependent on the substance that affects Nortriptyline (other than the dependence you all ready had from taking over a year ago.) Without beads, tapering is so much harder, and you are so compromised as it is.

 

4. Muscular contractions in your jaw are a very bad sign, and the drug must be affecting the muscles that operate your bladder.  With your heart issues, any adverse effect that is contracting muscles seems much too risky.

 

I would consider this a failed reinstatement of Venlafaxine, but if you keep taking it, keep posting notes, please.  In fact, keep posting notes either way, ok?

 

I feel, that at this point, a bridge to liquid Prozac in order to keep the serotonin effect going, is also much too risky.  Your system has been through Hell, and risking another drug reaction right now does not seem wise.  You need as few changes as possible, and stopping the Ven is one change.  I would stop, if I were you.

 

I’m here for you.  I’ll support you emotionally as much as I can.  I’m so sorry your doctors have no idea what they are doing, and that your psychiatrists hurt you and then abandoned you.  They should go to jail, if you ask me, but let’s focus on your health.  Anger is not productive.  There will be time for that later.

 

—Rosetta

 

 

[Alan1234]

25 minutes ago, Rosetta said:

I’m sorry, Alan.  With that sort of “help” from your pharmacist and doctor I would feel that I could not afford to get hooked on Venlafaxine!  You have taken it since Nov 16th.  Today is the 24th.  If I were you I would stop.

 

I realize you have some dependency to Venlafaxine from over a year ago, but the muscle contractions are too concerning.  When I agreed with you that you could be dependent on Vortioxetine’s serotonin effects, and therefore you were afraid to stop Venlafaxine’s serotonin action, I did not anticipate being unable to get Ven with beads in the capsules!
 

1. Once you are hooked on this formulation of Venlafaxine, the XR versión, switching to beads will be rocky because it will be switching from XR to non-XR.  Every change is going to increase your dysautonomia condition.  The switch will be a change.  I would feel that I could ill afford that.

 

2.  You can’t even get the beads in order to taper.  If I couldn’t get the form of Ven that has beads, in your condition, I couldn’t taper.  Rhiannon tapered Effexor by dry cutting.  She used a scale that costs about $40 US.  As far as dissolving the drug, you could stir the mixture of water up so that the powder is swirling around quite well and pour off your dose.  Then, you could swirl that amount up really well and drink it fast.  People do this, but I keep coming back to the fact that you have been taking Ven only 9 days, and I would not feel that getting hooked by trying to taper — in an unsatisfactory fashion at that — made sense.
 

3. I know that it’s scary to stop, but it’s scarier, to me, for you to get hooked on Venlafaxine again.  Venlafaxine,  given it’s affect on Nortriptyline, makes no sense as you have not taken it long enough to become dependent on the substance that affects Nortriptyline (other than the dependence you all ready had from taking over a year ago.) Without beads, tapering is so much harder, and you are so compromised as it is.

 

4. Muscular contractions in your jaw are a very bad sign, and the drug must be affecting the muscles that operate your bladder.  With your heart issues, any adverse effect that is contracting muscles seems much too risky.

 

I would consider this a failed reinstatement of Venlafaxine, but if you keep taking it, keep posting notes, please.  In fact, keep posting notes either way, ok?

 

I feel, that at this point, a bridge to liquid Prozac in order to keep the serotonin effect going, is also much too risky.  Your system has been through Hell, and risking another drug reaction right now does not seem wise.  You need as few changes as possible, and stopping the Ven is one change.  I would stop, if I were you.

 

I’m here for you.  I’ll support you emotionally as much as I can.  I’m so sorry your doctors have no idea what they are doing, and that your psychiatrists hurt you and then abandoned you.  They should go to jail, if you ask me, but let’s focus on your health.  Anger is not productive.  There will be time for that later.

 

—Rosetta

 

 

Hi Rosetta 

thank you for your reply and support as always. 
 

yes my doctor and pharmacy just don’t get it. When I talk about withdrawal they have minimal insight and I can tell they think I’m a little mad.

 

ive taken 6mg of Venlafaxine so far today and I feel better without it, still dry mouth but the jaw is much better. I have noticed though at rest when I cross my legs, my legs are pulsing and contracting the knee on their own every single second. 
 

what do you mean Venlafaxine affects on nortryptaline? Do you mean noradrenaline? If you do I agree I think that’s the cause of my insomnia. 
 

I feel mentally much better with more insight today, obviously my anxiety is still high but my thoughts and insight is clearer.

 

By writing symptoms down I’ve realised that my urination is the biggest driver of my mental health problems which started on Venlafaxine in 2016 and as I’ve realised has got unbearable to the worst every over the last 4wks back on these meds. It’s gone from 15x a day to 22/28x a day, which is why I’m housebound. 
 

I realise that I’ve been blocking this out for so long. I do think there might be something going on that is causing it to be so severe. I have no idea what it is but I’ve lost nearly 2 stone in weight, while still eating since March and now I have rashes on my face and liver pains (although the liver pains are long standing and for what I was put on Paxil for originally) 

 

im under a urologist who can’t find the cause of my bladder issues. He’s referred me to neurologist and an endocrinologist for which I’m awaiting tests. I wonder if it could be a problem with my kidneys or Lupus (pattern of facial rash) but I don’t really know and I think this is driving my anxiety. I also have the hormonal issues that are recent over the last couple 20mths. 
 

I think clearly I am going through prolonged withdrawal,  but I’m really starting to doubt If that is all I’m going though because of number and severity of some symptoms. I really think this is driving the anxiety. It’s no wonder I have insomnia when I need the toilet every hour or so through the night. 

 

 

[ChessieCat]

10 hours ago, Alan1234 said:

I’ve been in touch with my Doctor and pharmacist and they aren’t much help even though nice they say they can’t help me.

 

You could print out this leaflet and give it to both of them:

 

https://www.rcpsych.ac.uk/docs/default-source/mental-health/treatments-and-wellbeing/print-outs/stopping-antidepressant-printable.pdf?sfvrsn=2c9a63e0_2

 

Also see, especially ALL of Post #1:

 

how-to-talk-to-a-doctor-about-tapering-and-withdrawal-what-to-expect

 

 

Edited November 24, 2021 by ChessieCat

[Rosetta]

Venlafaxine is an SNRI. The S is for serotonin, and the N stands for Nortriptyline, another neurotransmitter.  Vortiotexitine is an SSRI, and it works on serotonin only (at least directly - the truth is SSRIs indirectly affect a lot of hormones and neurotransmitters, Prozac is an SSRI, too.)

Taking Venlafaxine for too long will get you hooked on a Nortriptyline reuptake inhibitor drug whereas Vortiotextine will not.  You took Vortiotexitine for about 4 weeks and Ven for about 1-2 weeks.  The different drugs may not cover for each other very well, and that’s why switching drugs can cause WD problems.  However, whatever serotonin effect Vor and Ven may share, Vor is not supposed to directly affect Nortriptyline neurotransmitter reuptake.  I hope that makes it clear.

[Alan1234]

Symptom diary from yesterday 

 

9:10 anxiety very high 

9:20 6mg Venlafaxine 

9:40 dizziness head spinning when standing 

10:21 Urinate 

10:40 whole left leg went numb went to stand up and leg didn’t work and fell over 

10:45 urinate 

11:20 urinate 

11:40 urinate 

12:35 urinate 

13:30 urintate 

13:45 anxiety moderate (improved)

14:05 urinate 

17:03 urinate 

18:59 Urinate

19:10 Utinate 

19:20 Urinate 

20:11 urinate 

20:50 urinate 

22:25 Urinate 

22:30 Bed 

23:07 urinate 

00:30 urinate sleep 

02:55 utinate, High anxiety, sleep 

03:55 urinate, awake 

04:10 Urinate, awake 

04:30 Urinate, awake

06:30 urinatate awake

07:00 painful calf’s, restless legs calf’s

07:47 urinate awake 

08:10 extreme restless legs calf’s 

9:00 urinate 

 

bladder pain all day and night 

 

 

Edited November 27, 2021 by ChessieCat
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[FindRest]

@Rosetta

13 hours ago, Rosetta said:

Venlafaxine is an SNRI. The S is for serotonin, and the N stands for Nortriptyline, another neurotransmitter.

The “N” of SNRI actually stands for “norepinephrine”.  “Nortriptyline” is the generic name for the antidepressant Pamelor.

[Rosetta]

56 minutes ago, FindRest said:

@Rosetta

The “N” of SNRI actually stands for “norepinephrine”.  “Nortriptyline” is the generic name for the antidepressant Pamelor.

Thank you!

[Alan1234]

Symptoms list 

 

9:20 Breakfast

9:25 3mg Venlafaxine 

9:30 high heart rate

10:15 urinate

10:40 high heart rate

11:42 urinate 

12:14 urinate 

13:28 Urinate. Anxiety high heart rate

14:19 urinate, feeling very down 

15:30 urinate, anxiety palpitations 

16:00 very high heart rate, anxiety severe, panic attack

17:20 urine high heart rate

18:20 urinate 

19:40 utinate 

21:50 Urinate, Chest tightness, breathless 

23:10 urinate bed

00:00 sleep

02:00 urinate 

04:00 awake urinate, anxiety, cheat palpitations. Awake 

04:30 awake, severe restless legs, tinnitus anxiety 

4:40 urinate 

5:30 sleep

6::30 urinate Sleep

7:20 awake anxiety, restless legs, urinate 

8:14 severe restless legs, tinnitus high, urinate 

9:00 urinate

 

 

 

Edited November 27, 2021 by ChessieCat
reduced font size

[Altostrata]

On 11/20/2021 at 4:16 AM, Alan1234 said:

I am currently taking 12.5mg Venlafaxine a day. I have been taking it for 7 days.

 

it’s too early to say about results as the adverse affects from the 3wks of Vortioxetine have only stopped a few days ago. I would say I’m not suicidal on it so that’s a positive but my bladder is generally worse. I took Vortioxetine consistently every day at 5mg but had to reduce down to 2.5mg which helped reduce the severe side affects but I still had them. 
 

ive been on testosterone since May 2020....I have been told that my testosterone was less than a ladies and it couldn’t have been any lower. They have told me that I must continue to take it for a number of reasons. I take the tadfil and exemestane as I have too much estrogen which was the problem before the testosterone. Endocrinologist has said probable cause Venlafaxine as known to cause high prolactin. 
 

Im no longer taking Buspirone, it made my Akathisia worse after 4days. 
 

im ni longer taking propanol it makes my insomnia worse and also I’m worried about rebound affect 

 

 

How did any amount of venlafaxine enter the picture? Why are you still taking it if it has an adverse effect on your bladder?

 

Have you researched the potential adverse effects of ALL the drugs you're taking, including the testosterone, tadfil, and exemestane (which do not appear in your daily notes), and their effects on your heart and urinary system? How about their effects on sleep and anxiety?

 

For example, US FDA has a black box warning on testosterone injections:

Quote

IMPORTANT WARNING

....Testosterone enanthate injection (Xyosted) and other testosterone products may cause an increase in blood pressure which can increase your risk of having a heart attack or stroke that may be life-threatening. Tell your doctor if you have or have ever had high blood pressure, heart disease, a heart attack, or a stroke. Tell your doctor and pharmacist if you are taking medications for blood pressure, pain, or cold symptoms. If you experience any of the following symptoms, call your doctor immediately: chest pain; shortness of breath; pain in the arms, back, neck, or jaw; slow or difficult speech; dizziness or faintness; or weakness or numbness of an arm or leg.

 

Did you discuss potential adverse effects of ALL your drugs with your cardiologist?

 

Have your skin symptoms resolved?

 

None of the above, by the way, is in the purview of this site. We do not provide cardiology, endocrinology, or allergy services. I spent time I really need to spend on other projects to look up testosterone adverse effects. That is your job, Alan, not mine.

 

I can't tell what might be a withdrawal symptom. You will need to rule out potential allergic or adverse effects of any of the drugs you're taking. Let us know what's left.

[Alan1234]

4 hours ago, Altostrata said:

 

How did any amount of venlafaxine enter the picture? Why are you still taking it if it has an adverse effect on your bladder?

 

Have you researched the potential adverse effects of ALL the drugs you're taking, including the testosterone, tadfil, and exemestane (which do not appear in your daily notes), and their effects on your heart and urinary system? How about their effects on sleep and anxiety?

 

For example, US FDA has a black box warning on testosterone injections:

 

Did you discuss potential adverse effects of ALL your drugs with your cardiologist?

 

Have your skin symptoms resolved?

 

None of the above, by the way, is in the purview of this site. We do not provide cardiology, endocrinology, or allergy services. I spent time I really need to spend on other projects to look up testosterone adverse effects. That is your job, Alan, not mine.

 

I can't tell what might be a withdrawal symptom. You will need to rule out potential allergic or adverse effects of any of the drugs you're taking. Let us know what's left.

Venlafaxine entered the picture because the Pysciatrist discharged me as being non compliant when I said I could tolerate the side affects of Vortioxetine no longer. He discharged me with no meds. My GP didn’t know what to do other than not to abruptly stop it with my history so suggested Venlafaxine as my body knew it. I am no longer taking it.

 

The cardiologist i saw im told is a leading one in the UK. He never was concerned about any medication other than unless you have to don’t take anything. He referred me to Endocrinologist as felt their must be an adrenal cause of my symptoms for such a dramatic change in my cardiac function. 
 

No my skin issues haven’t resolved I have a butterfly rash on my face it’s probably the worst it’s ever been. 
 

I have researched all the drugs I’m on or have taken. The problem being there’s so many potential side affects to every single drug especially if you go on the MHRA yellow card system in the UK that every drug I’ve taken or I’m on could have a possibility to cause these problems. I’ve stopped each drug I’m on at different times but they haven’t made any difference to my symptoms which makes me think it could be withdrawal or I have a separate undiagnosed health condition that is underpinning.

 

I have made a review with the endocrinologist to discuss my health atm with a view to testosterone over the next 6mths on Monday. I have also asked for a referral to a Rheumatologist as that’s the only place I haven’t explored. I’m told it will be at least the end of January though before I can see someone 

[Rosetta]

How are you doing?

[Alan1234]

4 hours ago, Rosetta said:

How are you doing?

Very strange!

 

my heart rate is racing for most of the day which just keeps triggering anxiety, panic, constant breathlessness but I’m slowly accepting and learning to deal with it.

 

This and the urination aren’t changing and something I’m having to learn to live deal with.

 

The most concerning symptom is no matter how exhausted I am or how late I go to bed is I simply can’t sleep latter than 5-7am. I awake every morning with which I can only describe as severe bilateral restless legs, calf muscle cramps, nerve pains/discomfort in the calf’s. When I get up they dampen a little with moving around but make it very uncomfortable to sit down or stay still.

 

I wondering if it’s a manifestation of the constant anxiety and just adrenaline I’m my system but it’s concerning me as this has been gradual since May/June and it’s at its worse it has been. I just can’t seem to get any respite from it and you can set you clock by when it peaks everyday.

I’m still getting muscle twitches in one calf and the opposite arm as well (arm started only 6/8wks ago).

 

im wondering because of the high frequency of urination and intermittent palpitations if I could have a electrolyte deficiency such as potassium and if it’s worth experimenting with supplementation of it ? Or is it some form of chronic Akathisia/peripheral neuropathy brought on by withdrawal?

 

 

 

[Rosetta]

Those are cortisol spikes — every morning.  Very, very common in withdrawal.  We are designed to have cortisol slowly rise from about 4:00 am to wake up time, but in WD there is a spike that wakes us suddenly.  The same cortisol keeps us up and keeps us anxious.  This will slowly become less pronounced.  I don’t have them very often, and they are much more mild.

 

Yes, you could have an electrolyte imbalance.  Many of us do in WD.  Eat some salty foods.  Food is usually the best “supplement.”  Processed supplements are risky.  We don’t know what is in them and could overdose.  

[Alan1234]

21 minutes ago, Rosetta said:

Those are cortisol spikes — every morning.  Very, very common in withdrawal.  We are designed to have cortisol slowly rise from about 4:00 am to wake up time, but in WD there is a spike that wakes us suddenly.  The same cortisol keeps us up and keeps us anxious.  This will slowly become less pronounced.  I don’t have them very often, and they are much more mild.

 

Yes, you could have an electrolyte imbalance.  Many of us do in WD.  Eat some salty foods.  Food is usually the best “supplement.”  Processed supplements are risky.  We don’t know what is in them and could overdose.  

Thank you that’s great advice, makes sense. 
The constant calf cramps/nerve symptoms in the calf’s, is this another withdrawal symptom? This only gradually started since April, May, the recent Vort, Bus, Ven seemed to have really aggravated it.

 

I paid to see a private Urologist yesterday. He says looking at my symptoms and tests I’ve had done I have a neurological sensory bladder impairment. He says the only treatments that may be 50/50 if they help are Mirabegron, Solfenacin or Botox injections.

 

im very worried about taking medications, but it is severe. I guess I should hold out as long as I can 

[Rosetta]

I believe that at this point you should avoid all drugs.  All these symptoms will very slowly fade away.  It is going to take a long time, but additional drugs can only harm you.

[Faure]

Hi @Alan1234 i watched some of that Mental Wealth Summit but it was very challenging to listen to so I have only done the first day and the first person from day 2. But she is a psychotherapist who has been working with a cross party parliamentary group on anti depressant withdrawal.  There is a very useful document that's been put together with guidance for therapists supporting clients in withdrawal. I wondered if it might be useful for you to show GP or your wife (it's very long but you can look at the contents and click to the part you want). There are also links to some papers on withdrawal that might be useful for the doctors who disregard your experience, if they'll read them. Anyway, the website is http://prescribeddrug.org/research/

[Alan1234]

31 minutes ago, Faure said:

Hi @Alan1234 i watched some of that Mental Wealth Summit but it was very challenging to listen to so I have only done the first day and the first person from day 2. But she is a psychotherapist who has been working with a cross party parliamentary group on anti depressant withdrawal.  There is a very useful document that's been put together with guidance for therapists supporting clients in withdrawal. I wondered if it might be useful for you to show GP or your wife (it's very long but you can look at the contents and click to the part you want). There are also links to some papers on withdrawal that might be useful for the doctors who disregard your experience, if they'll read them. Anyway, the website is http://prescribeddrug.org/research/

Hey @faure

thank you for thinking of me and sending this. I doubt it will be useful to explain to my GP other than to potentially prevent someone else going through what I have (still won’t see me face to face), I will definitely save it for that purpose though thank you. I think I will need it for my wife. 
ive now been sent back to the cardiologist with some post Covid vaccine cardiac arrhythmia problems. So I’ve been told I have to take a beta blocker. It’s really flaring my anxiety up  and don’t know what I’ve done in my life to get here. Hopefully it will pass with time.

 

thank you again and next time we speak hopefully I will be in better shape. I hope your recovery is going well 

[DebM]

7 hours ago, Alan1234 said:

Hey @faure

thank you for thinking of me and sending this. I doubt it will be useful to explain to my GP other than to potentially prevent someone else going through what I have (still won’t see me face to face), I will definitely save it for that purpose though thank you. I think I will need it for my wife. 
ive now been sent back to the cardiologist with some post Covid vaccine cardiac arrhythmia problems. So I’ve been told I have to take a beta blocker. It’s really flaring my anxiety up  and don’t know what I’ve done in my life to get here. Hopefully it will pass with time.

 

thank you again and next time we speak hopefully I will be in better shape. I hope your recovery is going well 

 

 

don’t know what I’ve done in my life to get here

 

Hi Alan this is DebM,

 

I read these words and I feel deep compassion for your situation. I don't know you but I feel very strongly you did nothing, nothing to be in a situation in which the medical community has abdicated responsibility  which has contributed to this level of suffering in your life. The medical community failed you. The medical community failed us all.  I trusted the doctors. I now am investing in trusting myself, my agency, and the knowledge I gain. I am so sorry for your pain. I have felt this pain and have questioned as you have. It passes (sometimes more quickly, this week more slowly, yet I find it does always pass)  and I remind myself that NO ONE deserves this pain. NO ONE. Two weeks into my withdrawal which no medical doctor acknowledged my husband's family all had Covid. His friend died from Covid. HIs parents died three days apart from Covid.  Three deaths in one week. My daughter had a cardiac reaction to her booster after the funeral while I was in active withdrawal and grieving. She is on a heart monitor now for two weeks. Even as I shared my knowledge about withdrawal with doctors and shared the deaths our family endured not one word of acknowledgement regarding the suffering of withdrawal except to tell my my brain is broken and likely needs medication. Life is full of suffering.  I do not have words except to say amidst the suffering of death, loss, and withdrawal  I have small rays of hope. I found this site, the sun shines some days, my daughter had no cardiac arrhythmia's in the month since the funeral, my friend laughed with me. I wish you peace Alan. I hope you can allow yourself to extend compassion for yourself. I wish everyone who finds this site peace and healing. May we all be healed.

[Alan1234]

Thank you for your heart felt message.  
it sounds like you are going through so

much. For you to have the strength and take the time to write such deep and heart felt words to me tells me I know your going to heal and be well again, it takes tremendous strength to go through what your going through yet still message me. 
 

im very lost and in the worse place I can imagine. I’ve tried reinstatement and I’ve tried without. Every failure just seems to make me worse, I wish I could be stabilised on meds and I wish for my whole family and myself I knew about these drugs and tapering when I followed advice to stop from 18.75mg in March 2020. Even then it toool me over a year to find this site as no one recognised what was wrong other than I was ill. My symptoms have changed a lot since then. I just wish for some peace and healing for yours and my own nervousness systems.

 

God bless 

[DebM]

 just wish for some peace and healing for yours and my own nervousness systems.

 

Yes. Yes. I wish everyday.  More than wish, I try to say to myself several times a day, I am well. Even as I feel fairly unwell. I think I remember hearing that the Navajo Indians prayed a prayer of gratitude for what has already come. Such as being thankful for rain even in the midst of a drought. I think I heard this in Spontaneous Healing of Beliefs by Greg Braden. I cling to hope and the actions that are said to help even as I am also feeling unwell and scared. Thank you for your words Alan. 

 

I have found I have to let go of the past as I cannot go back and change that. I can only change now. 

 

May you feel moments of peace today.

Deb

[HealthHopeHappiness]

Hi @Alan1234i just wanted to pop onto your thread and offer some reassurance about the calf muscle symptoms. This remains one of my worst WD symptoms - restless legs, calf twitching and weakness. From what I’ve read, it is very common in WD. So sorry to hear how hard your journey is. I hope you begin to see an improvement soon. 

[Alan1234]

29 minutes ago, HealthHopeHappiness said:

Hi @Alan1234i just wanted to pop onto your thread and offer some reassurance about the calf muscle symptoms. This remains one of my worst WD symptoms - restless legs, calf twitching and weakness. From what I’ve read, it is very common in WD. So sorry to hear how hard your journey is. I hope you begin to see an improvement soon. 

Yes I had never had RLS in my life until I was put on 30mg Mirtazapine. It even caused left arm nerve pains restlessness which has left my left arm weaker and it shakes while holding things. The calf cramps and muscle twitching only developed after being on 3.75mg of it and then I was taken into hospital for a week and they wouldn’t prescribe it me. 
 

yes unfortunately I’ve made my journey this hard myself after first being ignorant to withdrawal then suffering that bad trying to reinstate as made me like this. I’ve just passed out while trying to walk 100yrds up the street. It looks like I’m going to have to stay in the house until I get some improvements. Let this be a lesson to everyone these drugs are very dangerous. 

[Rosetta]

Thinking of you, Alan.  Just do what you can and rest when you need to.  Please keep taking notes, ok?  Take care, R