Neha9: Rapid change of medicines and Cold turkey (Plz help)

[Neha9]

Hi, I am is 41 years old. I was on Venlafaxine XR for my vestibular migraine in 2019 to 2021. My dosage was 37.5 mg one tablet every 3^rd day which was suggested by my neurologist as i was getting hives from taking the medicine. For my hives I was taking half tablet of Allerga M (Montelukast 10mg + Fexofenadine 120mg) twice a week. I took Venlafaxine XR for 1.5 years and Allerga M for 2 years and then CT it as all my vestibular migraine symptoms had gone away. When i CT from venlafaxine I did not get any withdrawal symptoms for 9 months. Then after 9 months in June 2022 my vestibular migraine symptoms (swaying, light and sound sensitivity, unstable feeling, surroundings looking dim and blurred vision) came back, I tried to re-introduce Venlafaxine XR again but on taking just one tablet after 9 months my occipital area started paining and i started getting internal trembling inside my body. I still tried taking it the very next day too but had the same issue so stopped taking it and went to the neurologist. The neurologist then tried paroxetine (1 tablet) which didn’t suit me and so he then tried the following medicines -prednisolone (steroid 1 tablet), betahistine (2 tablets), flunarizine (half tablet) and all the above made my condition even worse as she started getting leg jerks while sleeping which i wasn’t getting before with my vestibular migraine symptoms. Then the neurologist finally said lets try Venlafaxine XR again as that has helped me in the past in 2019 and inspite of hearing I was having trouble taking it told me to try it again.

 

Then when I tried Venlafaxine XR again i started getting brain zaps and myoclonic jerks and my stomach and vagina started making loud noises. This had never happened before so i stopped Venlafaxine XR and went back to the neurologist. He then prescribed a Benzo - Alprazolam (1 tablet) which i didn’t feel well on as my heart started racing rapidly and i had chest pain as well so then i went back the next day and he gave me Sodium Valproate (anti epileptic medicine) and told me not to come back and see a psychiatrist. Then that night when i took the sodium valproate tablet a glass breaking sound while swallowing started in my ears and my brain and hip started thumping so i stopped the medicine on 17^th August 2022 immediately. Then on 19^th August 2022 as i had Covid symptoms especially cough and sore throat i took a cough syrup which was Dilo DX syrup (Chlorpheniramine maleate with Dextromethorphan hydrobromide) 5 ML, this is when my entire symptoms changed for the worse. My occipital area started shaking internally and my vestibular symptoms went away. As I was still having covid symptoms like cough and sore throat she took Lecope AD (Levocetrizine , phenylephrine and ambroxol) - 1 tablet while the shaking in the occipital area still continued. I couldn’t understand what the internal shaking was for a week but as they were not stopping and as per the instructions of the neurologist I finally met with a psychiatrist. I was also exposed to green fungus around the same time in the house as it was rainy season here in Mumbai (India).

 

The psychiatrist ordered an MRI of the brain which was clear. After that i met various psychiatrists and neurologists who said this was Functional or somatic symptoms of depression and they tried to stop the internal shaking or vibrations with the below class of medicines which made my condition even more worse as I was unable to tolerate any medications because my nerves used to pull and pain and my internal shaking/tremors used to increase on taking every medication. I used to then discontinue the medication after 2 to 3 tablets.

 

Below is the class of medications tried on me since August 2022 till date:-

(Small doses of each medication was tried and discontinued)

 

YEAR – 2022

·      Provanol 20 MG (Propranolol hydrochloride tablets IP) - Half tablet - Beta blocker.

·      Nexito 5 mg (escitalopram)- Half tablet – SSRI Antidepressant

·      Provanol 10 MG – (Propranolol hydrochloride tablets IP) Half tablet - 2 days - Beta blocker.

·      Rejunex CD 3 - Multivitamin

·      Folinext  (Folic Acid and methylcobalamin) - 1 tablet - Vitamin

·      Homeopathy medicine – GAVE EXTERNAL TREMORS

·      Zapiz 0.25 mg (clonazepam) Half tablet – 3 days – Benzodiazepine.

·      Provanol 2.5 mg (Propranolol hydrochloride tablets IP) – 3 days - Beta blocker.

·      Tynept 12.5 mg (Tianeptine) – Half tablet for 2 days - Dibenzoxazepine Antidepressant

·      Mirtaz 7.5 mg (Mirtzpine) - Half tablet – Tetracyclic Antidepressant

·      Synaptol 50 mg (Tolperisone hydrochloride) - Half tablet - Muscle relaxer. 

·      Gabapin 100 mg (Gabapentin tablet IP) - Half tablet - Antiepileptic

·      Homeopathy medicine

·      Ayurvedic medicine

·      Evion - LC - Half tablet (Vitamin)

·      Solopose - MD 0.25 mg (Etizolam) - Half tablet - Benzodiazepine. 

YEAR - 2023

·      10th Jan - Ascoril D plus ( Dextromethorphan hydrobromide + phenylephrine hydrochloride + Chlorpheniramine maleate) - 5ML  - Took it for dry cough

·      11th Jan - Lecope AD ( Levocetrizine , phenylephrine and ambroxol) -  1 tablet for 4 days – Took it for sore throat

·      16th Jan - Nurewire Tablet - 1 tablet (Vitamin)

·      23rd Jan - Cetzine (cetrizine) - 2.5 MG  - Antihistamine

·      25th Jan - Pacitane 2 MG – Half tablet (Trihexyphenidyl) - Anticholinergic medication

·      27th Jan - Allegra 180 - Half tablet (Fexofenadine) - Antihistamine

·      1st Feb to 3rd Feb - Atrest 12.5 mg -Half tablet (Tetrabenazine) – Vesicular Monoamine Transporter 2 inhibitor

·      6th & 7th Feb - Benadryl syrup - 2 ML – Cough syrup

·      8th & 9th Feb - Supradyn - 1 tablet - Multivitamin

·      14th & 15th Feb - Practin syrup 2 ML (Cyproheptadine) - Antihistamines

·      18th Feb - Allegra 180 - Half tablet

·      21st & 22nd Feb - Mentat (Himalaya Ayurveda)

·      28th Feb - Allegra M ( Montelukast 10mg + Fexofenadine 120mg) – Half tablet Leukotriene antagonist and antiallergic medicine

·      2nd & 3rd March - Atarax 5 mg - Half tablet (Hydroxyzine) - Antihistaminic medication

·      6th March - Pramipex 0.125 mg - Half tablet (Pramipexole ) - Dopamine agonists

·      9th March - 1 CBD Gummy

·      10th March - Levocet 2.5 MG (Levocetirizine) - Antihistamine

·      11th March - Buspin 2.5 MG (Buspirone) - Anxiolytics

·      14th March - Levocet - Half of 2.5 MG

·      16th March - Levocet - Half of 2.5 MG

·      21st March - Bilagra 3 MG (Bilastine) - Antihistamine

·      HOSPITALISED on 23rd March to 30th March - Vantaxa 5 MG (Vortioxetine) – Half tablet for 1 day - serotonin modulator and stimulator Antidepressant  then Prothaden 25 MG (Dosulepin) – Half tablet for 1 day + quarter tablet for 3 days. - Tricyclic antidepressant

·      1st , 3rd , 5th & 7th April - Opiprol 50 MG (Opipramol) – quarter tablet  - Tricyclic antidepressant

·      8^th April to 6^th May - Lecope AD ( Levocetrizine , phenylephrine and ambroxol) - Mucolytic, Antihistamines and Nasal decongestants – Took it for Sore throat

·      10th May - 1 drop of Rudra Taila (CBD drops)

·      15th to 22^nd May - Metolar 25 MG - Half tablet (Metoprolol Tartrate tablets IP) - Beta-blockers. 

·      25th & 26th May - Homeopathy medicine (3 pills)

·      13th to 15th June - Homeopathy medicines

·      16^th to 21^st June – Neksium 40 mg ( Esomeprazole tablets I.P ) – 3 tablets – Proton pump inhibitor and Motilium M (Domperidone tablets I.P) – 3 tablets- Dopamine-2 receptor antagonist

·      26^th June - Homeopathy medicine

·      14^th July to 22^nd July – Oflox 200 MG  - Ofloxacin Tablets I.P   – Antibiotic

·      26^th July – Gabawin 25 MG – Quarter Tablet (Pregabalin) – Antiepileptic  

·      30^th July – Deslor 5 mg - Quarter tablet - Desloratadine- Antihistaminic medication

·      8^th August - Half of Allegra 180 (Fexofenadine) – She takes half tablet of Allegra 180 every 3 days for her hives till date.

·      30^th August – 1 Meftal spas (Dicyclomine (10mg) & Mefenamic Acid (250mg) Anticholinergic and NSAID

·      11^th September - Homeopathy medicine + Half of Meftal 500 (Mefenamic Acid)

·      3^rd & 4^th October – Half of Syndopa plus (Levodopa (100mg) + Carbidopa (25mg) - Antiparkinson agent

·      6^th October - Half of Allegra 180 (Fexofenadine)

·      7^th October – 1 + ½ Lecope AD (Ambroxol (60mg) + Phenylephrine (5mg) + Levocetirizine (5mg) Mucolytic, Antihistamines and Nasal decongestants – Took it for Sore throat AND 2 tablets of Lanol ER (Paracetamol 650mg) - Analgesic (pain reliever) and anti-pyretic (fever reducer)

·      23^rd October – 1 tablet of NOW - Saccharomyces Boulardii probiotic – 5 billion CFU 

·      26th October – 1 tablet of Pan 40 (Pantoprazole Gastro resistant tablets IP ) - Proton pump inhibitor

·      27th October - Half of Allegra 180 (Fexofenadine)

·      28th October – 1 tablet of Nexpro 40 (Esomeprazole magnesium tablets I.P AND 1/4th tablet of Gastractiv 10mg (DOMPERIDONE) - dopamine antagonist

·      29^th October - 1 tablet of Nexpro 40 (Esomeprazole magnesium tablets I.P - Proton pump inhibitor (Took for 10 days).

 

My current symptoms since 15 months are:-

Internal tremors running from head to toe, involuntary movements, nerves pull and pain on taking any medication, pacing, electrical sensitivity to electronics, tingling in hands and feet, burning of skin, external tremors, pain in my occipital area and neck, pulsating at the base of the head which goes down to my entire body. The neurologists did various tests like MRI of cervical spine, F DOPA PET Scan – Brain, Various blood tests, Whole Genome Sequencing (Genetic testing) and all were clear.They then officially diagnosed me with Functional Neurological Disorder (conversion disorder). Currently I can barely walk and im homebound for 15 months now. I currently take only my thyroid medication which is Thyroxine 112 mcg every morning before breakfast – 1 tablet and half tablet of Allegra 180 MG (fexofenadine) – once a week for Hives.

 

The diagnosis that I have received from most neurologist and psychiatrist is that I have Functional neurological disorder (conversion disorder) or Depression and my symptoms are somatic. But I feel this could Kindling or Akathisia or Serotonin syndrome or Mast cell activation or Mold or Long Covid or Withdrawal from the rapid trial and error of medicines but no doctor is ready to help me or give me clarity as to what is wrong with me and why no medication is working on my body?  I have tried counselling, EMDR, CBT, DBT, Physiotherapy, ayurvedic, homeopathy and every allopathy medicine possible but my condition doesn’t improve and im really suffering with the physical symptoms especially internal shaking/tremors. I have no idea what has gone wrong and no doctors in India help and they all have put their hands up. Currently no medication/ supplements works on my body and only makes my condition worse. Can someone please tell me what exactly am i suffering from? And is there any cure? I feel helpless and lost as as I have tried everything in my reach and my condition is getting worse day by day. Please Help and Guide me. Thank you so much in advance.

[LotusRising]

Hi @Neha9 and welcome to SA,

 

It sounds like your CNS was sensitized to the effects of venlafaxine when you tried to reinstate it, leading to destabilzation of your nervous system.

 

Please see this topic for further explanation:

 

Going on and off several more medications may have created further instability and confusion in your nervous system, since it is trying to regain homeostasis. 

 

You might find some of these links helpful:

 

What is Withdrawal Syndrome?

 

Keep it simple, slow and stable

 

Video on Recovery from Psych Drugs

 

Just to confirm, are you currently off all medications/supplements? 

[Neha9]

Hi, thank u so much for replying, the only two medications i take is my Hypothyroid medication every morning empty stomach called Thyroxine 112 mcg and Allegra 180 (1 tablet every week ) for my Hives. Currently i have stopped everything else. I did read about kindling ,  hypersensitivity and withdrawal, but i wanted to ask u is there anything that i can take to stop the electrical feeling / internal tremors running down my entire body from the occipital area as that is my main symptom. 

I currently have no quality of life and i am housebound for over 15 months now. I keep walking in the house and try to distract myself because when i sit or lie down the electrical feeling / internal tremors feel unbearable. I dont know where to turn to as no doctor here in india understands kindling. I have seen so many neurologists and physiatrists and all they tell me is to just live this way with all the symptoms as im unable to tolerate any antidepressants or benzo's or any supplements. I have no clue what to do to cure my symptoms , if you could help guide me i will be very grateful to you. Thank you.

[LotusRising]

7 hours ago, Neha9 said:

i wanted to ask u is there anything that i can take to stop the electrical feeling / internal tremors running down my entire body from the occipital area as that is my main symptom. 

In my experience, there isn't anything to stop this sensation except for time. I had internal tremors for many many months, but they have improved dramatically to the point where I almost never get them at all.

 

I would focus on eating clean, avoiding alcohol, supplements and other medications that are not necessary. 

 

Your symptoms should follow a The Windows and Waves Pattern of Stabilization, but it can of course be quite slow.

 

There are a lot of resources for coping with symptoms. I would start by looking through the symptoms and self-care topic to see if there's anything you can implement right now. 

 

https://www.survivingantidepressants.org/forum/8-symptoms-and-self-care/

 

Is it always going to be like this

 

Non-drug techniques to cope with emotional symptoms

 

I'm sorry, I wish I could offer you another solution, but time is the best healer in our situations. You may want to reach out to other members on the site for support.

 

Please let me know if you have any other questions. We are all here to support you 💖

[Neha9]

Hi, My name is Neha and i am from India. I was on Venlafaxine XR for my vestibular migraine in 2019 to 2021. My dosage was 37.5 mg one tablet every 3^rd day which was suggested by my neurologist as i was getting hives from taking the medicine. For my hives I was taking half tablet of Allerga M (Montelukast 10mg + Fexofenadine 120mg) twice a week. I took Venlafaxine XR for 1.5 years and Allerga M for 2 years and then CT'ed it as all my vestibular migraine symptoms had gone away. Then after 9 months my Vestibular migraine symptoms came back and so i took 1 capsule of Venlafaxine XR 37.5 mg again and this time on taking it my occipital area started paining and i started getting internal trembling inside my body. I still tried taking it the very next day too but had the same issue so i stopped taking it and went to the neurologist. The neurologist then did a trail and error of many medicines mentioned below and then i started getting the following symptoms mentioned below which i never had before , I am now homebound for 15 months and can barely walk. 

SYMPTOMS:-

Internal tremors running from head to toe,

Involuntary movements,

Nerves pull and pain on taking any medication,

Walking around in the house every 5 to 10 minutes

electrical sensitivity to electronics,

Tingling in hands and feet,

Burning of skin,

External tremors,

Pain in my occipital area and neck,

Pulsating at the base of the head which goes down to my entire body.

 

All the above started after the neurologist and psychiatrist tried the following class of medicines on me like :-

(Plz note only 1 to 2 tablets of each medicines was tried as my internal tremors used to increase and i CT'ed )

 

Antidepressants,

Benzos,

Betablockers,

Antiepileptic medicine, 

Anticholinergic ,

Antihistamines, 

Antiparkinson medicine, 

Dopamine antagonist etc 

(DETAILED MEDICATION LIST IS ATTACHED AS WORD FILE)

They also did various tests like MRI of  Brain and cervical spine, F DOPA PET Scan – Brain, Various blood tests, Whole Genome Sequencing (Genetic testing) and all were clear. 

Currently no medication/ supplements works on my body after the trial and error and only makes my condition worse.  I currently take only my thyroid medication which is Thyroxine 112 mcg every morning before breakfast – 1 tablet and half tablet of Allegra 180 MG (fexofenadine) – once a week for Hives. 

The neurologist and psychiatrist have no answers now and only say i Functional neurological disorder (conversion disorder) or Depression and my symptoms are somatic. But I feel this could Kindling or Akathisia or Serotonin syndrome or Withdrawal from the rapid change of medicines and Cold turkey of various medicines which were given to me

 

I have tried counselling, EMDR, CBT, DBT, Physiotherapy, ayurvedic, homeopathy and every allopathy medicine possible but my condition doesn’t improve and im really suffering with the physical symptoms especially internal shaking/tremors. 

 

Can someone please tell me is there any cure for these internal tremors? I feel helpless and lost as as I have tried everything in my reach and my condition is getting worse day by day.

 

Please Help and guide me as to what i can do to cure these internal tremors and other symptoms mentioned above?

Thank you so much in advance.

Neha. 

 

 

 

Medicines 2022 - Till date.docx

[Emonda]

Hi @Neha9,

I've just moved your new post in symptoms and self-care back here. Please keep everything relating to yourself here in your thread. It makes it easier for those trying to assist you.

 

Emonda.

[LotusRising]

Hi @Neha9,

 

I sent you some links previously, above. Did you get a chance to look at them?

 

This one may help you also:

 

 

I'm sorry you're experiencing a worsening of symptoms. Unfortunately, this can happen and the best way to cope with symptoms is by implementing coping skills.

 

Please have a look around the site. There are many resources.

[Neha9]

Hi @LotusRising

 

Thank you for all the links you sent, i actually have electrical sensitivity to electronics so im unable to use my laptop frequently but i am going through the links u sent slowly and steadily , i really appreciate all the help u have provided.  My internal tremors are really bad and im really going through a hard time but i will look around the site for coping resources like u suggested and will keep u posted on my progress. 

 

Warm Regards,

Neha.

[HelenR]

On 1/8/2024 at 10:59 AM, Neha9 said:

Hi, My name is Neha and i am from India. I was on Venlafaxine XR for my vestibular migraine in 2019 to 2021. My dosage was 37.5 mg one tablet every 3^rd day which was suggested by my neurologist as i was getting hives from taking the medicine. For my hives I was taking half tablet of Allerga M (Montelukast 10mg + Fexofenadine 120mg) twice a week. I took Venlafaxine XR for 1.5 years and Allerga M for 2 years and then CT'ed it as all my vestibular migraine symptoms had gone away. Then after 9 months my Vestibular migraine symptoms came back and so i took 1 capsule of Venlafaxine XR 37.5 mg again and this time on taking it my occipital area started paining and i started getting internal trembling inside my body. I still tried taking it the very next day too but had the same issue so i stopped taking it and went to the neurologist. The neurologist then did a trail and error of many medicines mentioned below and then i started getting the following symptoms mentioned below which i never had before , I am now homebound for 15 months and can barely walk. 

SYMPTOMS:-

Internal tremors running from head to toe,

Involuntary movements,

Nerves pull and pain on taking any medication,

Walking around in the house every 5 to 10 minutes

electrical sensitivity to electronics,

Tingling in hands and feet,

Burning of skin,

External tremors,

Pain in my occipital area and neck,

Pulsating at the base of the head which goes down to my entire body.

 

All the above started after the neurologist and psychiatrist tried the following class of medicines on me like :-

(Plz note only 1 to 2 tablets of each medicines was tried as my internal tremors used to increase and i CT'ed )

 

Antidepressants,

Benzos,

Betablockers,

Antiepileptic medicine, 

Anticholinergic ,

Antihistamines, 

Antiparkinson medicine, 

Dopamine antagonist etc 

(DETAILED MEDICATION LIST IS ATTACHED AS WORD FILE)

They also did various tests like MRI of  Brain and cervical spine, F DOPA PET Scan – Brain, Various blood tests, Whole Genome Sequencing (Genetic testing) and all were clear. 

Currently no medication/ supplements works on my body after the trial and error and only makes my condition worse.  I currently take only my thyroid medication which is Thyroxine 112 mcg every morning before breakfast – 1 tablet and half tablet of Allegra 180 MG (fexofenadine) – once a week for Hives. 

The neurologist and psychiatrist have no answers now and only say i Functional neurological disorder (conversion disorder) or Depression and my symptoms are somatic. But I feel this could Kindling or Akathisia or Serotonin syndrome or Withdrawal from the rapid change of medicines and Cold turkey of various medicines which were given to me

 

I have tried counselling, EMDR, CBT, DBT, Physiotherapy, ayurvedic, homeopathy and every allopathy medicine possible but my condition doesn’t improve and im really suffering with the physical symptoms especially internal shaking/tremors. 

 

Can someone please tell me is there any cure for these internal tremors? I feel helpless and lost as as I have tried everything in my reach and my condition is getting worse day by day.

 

Please Help and guide me as to what i can do to cure these internal tremors and other symptoms mentioned above?

Thank you so much in advance.

Neha. 

 

 

 

Medicines 2022 - Till date.docx 17.4 kB · 0 downloads

Hi @Neha9

Just to say I'm in a similar situation. All happened last year from gastritis and then being poly drugged swapping ssris etc then cold turkey from all meds then a small reinstatement of citalopram. It took 9 months to regain normality and begin my life again. Unfortunately I contracted COVID in Dec and was given antibiotics. My COVID was more sickness and diarrhea so was given anti sickness drugs to try. Anyway my gastritis has been horrendous ever since and now I'm back to square one with all the symptoms I had last year so I believe it's put my withdrawals back into full swing. I wake up every day with tremors all over. I can barely eat etc and am bed bound again. I also am on thyroxine for under active thyroid. I've just had results back from a blood test showing my thyroxine is too high so I'm reducing this. I'm hoping it may help the agitated state and tremors as this is similar to being in an over active thyroid state.

Have you had yours tested recently? It may be wise to get it checked as the same thing happened last year and my thyroid went haywire.

I am still on 5mg citalopram as I stabilized on that dose for 6 months and was going to start tapering again before all this happened.

Just to say last year I did recover quite well after 9 months but I'm hoping COVID and antibiotics etc have just set me back.

Keep on fighting hard, there were times I wanted to end my life last year due to all the side effects but I hung on and slowly got there. I can't take any supplements except a small spoon of flax seed oil. I have learnt a big lesson in that I am too sensitive to take any medication except my thyroxine and citalopram. The only thing keeping me going is that I beat it last year so I'm hoping I can do this again.

Stay strong, drink lots of water and you can beat this too.

[Neha9]

Hi @HelenR

Thank you so much for ur msg and giving me hope, I will also try little flax seed oil and see if it suits me. I am too sensitive to medicines as well and currently only on Thyroxine and Allegra 180 for chronic hives but its not been an easy ride, I am trying my best to beat this and i wont lie my symptoms are really bad especially my internal tremors, if you do come across something which might help the internal tremors in the future plz do let me know. I did check my thyroid a couple of months back and the results were not good so they increased my dosage to 112 mcg which im currently taking.  Im sorry to hear your struggling too , i hope u start feeling better again and ur symptoms go away permanently , you got this - i love that u beat this condition once and im sure you will beat it again.  

 

Also i wanted to ask you just incase u have an idea on this - is it possible that i can heal if i dont go back on an SSRI again? coz frankly they are just throwing me off and my body is not tolerating any medicines at all .  In such a scenario how will my symptoms stabilize without going back on medication? I am really suffering and loosing a lot of muscle too due to this internal shaking / tremors. 

 

Thanks,

Neha.

 

[HelenR]

27 minutes ago, Neha9 said:

Hi @HelenR

Thank you so much for ur msg and giving me hope, I will also try little flax seed oil and see if it suits me. I am too sensitive to medicines as well and currently only on Thyroxine and Allegra 180 for chronic hives but its not been an easy ride, I am trying my best to beat this and i wont lie my symptoms are really bad especially my internal tremors, if you do come across something which might help the internal tremors in the future plz do let me know. I did check my thyroid a couple of months back and the results were not good so they increased my dosage to 112 mcg which im currently taking.  Im sorry to hear your struggling too , i hope u start feeling better again and ur symptoms go away permanently , you got this - i love that u beat this condition once and im sure you will beat it again.  

 

Also i wanted to ask you just incase u have an idea on this - is it possible that i can heal if i dont go back on an SSRI again? coz frankly they are just throwing me off and my body is not tolerating any medicines at all .  In such a scenario how will my symptoms stabilize without going back on medication? I am really suffering and loosing a lot of muscle too due to this internal shaking / tremors. 

 

Thanks,

Neha.

 

@Neha9

I really don't know if increasing is the best thing for you. I cold turkey from my ssris only for a week. I was on 10mg citalopram for years but it stopped working and I had severe gastritis which increased my anxiety ten fold. The mental health nurses at my doctor's decided to try to increase my dose then swapped me to sertraline for two weeks plus diazepam and sleeping tablets. Then they tried me on mirtazipine but I only took one as it floored me so I stopped all meds. I panicked and after one week of no meds I reinstated 5mg of citalopram and then found this site. I realised after reading loads on here that I did the wrong thing.  I was so ill for months but stuck at 5mg of citalopram and a year later I stabilised. It was the hardest battle of my life with countless withdrawal symptoms but I had to get through it. Unfortunately after a stressful few months I got COVID and my gastritis flared up. The doctor gave me antibiotics and anti sickness Meds and now I've ended up back to how I was last year. I wish I'd never taken any medication/antibiotics as I'm so sensitive to everything. I had to go gluten free and drink lactose free milk due to my stomach. I'm not sure if it was the antibiotics that has upset my nervous system but I will never take them again.

It's so hard to decide what to do especially when you feel like death. 

I would leave well alone and try to stabilise your system. If you are still on an SSRI do not stop them yet. You really must follow the guidelines of decreasing by the tiniest percentage and stabilise. It may take months.

I admit my internal tremors are horrendous and I'm so scared to sleep as they are full on as soon as my eyes are open and only calm down late evening. 

It's so hard for us in this situation and some days I want to take anything to calm me down but I stop myself from reaching for pills.

Even though I stabilised last time I can't tell if I will again but I'm living in hope y brain will adjust once again and my nervous system will calm down. Being in bed everyday is killing me but I'm hoping little by little I can start to spend more time out of bed. Unfortunately with gastritis it's common to get anxiety due to the gut/brain connection so I'm trying to heal my gut .

I do hope you can find some relief soon. I'm not much help I'm sorry but here for a chat anytime.

 

 

[Neha9]

On 1/9/2024 at 2:30 AM, LotusRising said:

Hi @Neha9,

 

I sent you some links previously, above. Did you get a chance to look at them?

 

This one may help you also:

 

 

I'm sorry you're experiencing a worsening of symptoms. Unfortunately, this can happen and the best way to cope with symptoms is by implementing coping skills.

 

Please have a look around the site. There are many resources.

 

 

Hi @LotusRising

 

i wanted to ask you due to the internal tremors/shaking since 15 months , there is a lot of muscle wastage happening and i am loosing a lot of weight and muscle , any idea what can help with that? i am trying my best not to take any medicines and supplements as u had mentioned (only taking thyroxine for my thyroid and Allegra for chronic hives ) but the weight loss is really worrying me and im scared ill get bed ridden because of the muscle wastage.. I am sorry i have no doctor who helps me or guides me here in india and your the only person who came to my mind who i could ask.. thank u for ur time.

 

Plz do let me know, 

Thanks,

Neha.

[Neha9]

On 1/14/2024 at 1:59 AM, HelenR said:

@Neha9

I really don't know if increasing is the best thing for you. I cold turkey from my ssris only for a week. I was on 10mg citalopram for years but it stopped working and I had severe gastritis which increased my anxiety ten fold. The mental health nurses at my doctor's decided to try to increase my dose then swapped me to sertraline for two weeks plus diazepam and sleeping tablets. Then they tried me on mirtazipine but I only took one as it floored me so I stopped all meds. I panicked and after one week of no meds I reinstated 5mg of citalopram and then found this site. I realised after reading loads on here that I did the wrong thing.  I was so ill for months but stuck at 5mg of citalopram and a year later I stabilised. It was the hardest battle of my life with countless withdrawal symptoms but I had to get through it. Unfortunately after a stressful few months I got COVID and my gastritis flared up. The doctor gave me antibiotics and anti sickness Meds and now I've ended up back to how I was last year. I wish I'd never taken any medication/antibiotics as I'm so sensitive to everything. I had to go gluten free and drink lactose free milk due to my stomach. I'm not sure if it was the antibiotics that has upset my nervous system but I will never take them again.

It's so hard to decide what to do especially when you feel like death. 

I would leave well alone and try to stabilise your system. If you are still on an SSRI do not stop them yet. You really must follow the guidelines of decreasing by the tiniest percentage and stabilise. It may take months.

I admit my internal tremors are horrendous and I'm so scared to sleep as they are full on as soon as my eyes are open and only calm down late evening. 

It's so hard for us in this situation and some days I want to take anything to calm me down but I stop myself from reaching for pills.

Even though I stabilised last time I can't tell if I will again but I'm living in hope y brain will adjust once again and my nervous system will calm down. Being in bed everyday is killing me but I'm hoping little by little I can start to spend more time out of bed. Unfortunately with gastritis it's common to get anxiety due to the gut/brain connection so I'm trying to heal my gut .

I do hope you can find some relief soon. I'm not much help I'm sorry but here for a chat anytime.

 

 

 

Hi @HelenR 

i am not taking any Medicines except thyroxine 112 mcg for my thyroid and Allegra 180 for my chronic hives. Currently i am really struggling with my internal tremors and my whole body keeps shaking from inside since 15 months now due to which there is lot of muscle wastage happening and i am loosing a lot of weight and muscle. Any idea what can help with muscle loss / weight loss??

 

i am trying my best not to take any medicines and supplements but the weight loss is really worrying me and im scared ill get bed ridden because of the muscle wastage.. just thought ill ask u incase u can give me some suggestions to combat the weight loss and muscle loss due to all this shaking. Also do u have any idea can the shaking stop without being on any medication like an SSRI etc? 

 

I am really struggling but trying my best to push through , do let me know ur thoughts.. 

 

Thank u for ur time , i really appreciate all ur help.

 

Regards,

Neha.

[HelenR]

8 minutes ago, Neha9 said:

 

Hi @HelenR 

i am not taking any Medicines except thyroxine 112 mcg for my thyroid and Allegra 180 for my chronic hives. Currently i am really struggling with my internal tremors and my whole body keeps shaking from inside since 15 months now due to which there is lot of muscle wastage happening and i am loosing a lot of weight and muscle. Any idea what can help with muscle loss / weight loss??

 

i am trying my best not to take any medicines and supplements but the weight loss is really worrying me and im scared ill get bed ridden because of the muscle wastage.. just thought ill ask u incase u can give me some suggestions to combat the weight loss and muscle loss due to all this shaking. Also do u have any idea can the shaking stop without being on any medication like an SSRI etc? 

 

I am really struggling but trying my best to push through , do let me know ur thoughts.. 

 

Thank u for ur time , i really appreciate all ur help.

 

Regards,

Neha.

@Neha9hi there.

Well firstly I have to eat many small meals a day rather than 3 large ones. I'm eating chicken, rice and a few vegetables. I eat a  potatoes and plain cod or bassa. I snack on a handful of Almonds and bananas every day. I do have fat free natural yoghurt daily too. Any protein will help keep your muscles from shrinking. 

Although I'm bed ridden as my legs are like jelly and my brain is in pain I do get up every half an hour and just walk around my little house for a few minutes each time.

Lady year I lost all muscle mass and got bed sores which was horrible but I'm trying harder this time to combat that.

As for the internal tremors I really don't know if they subside if you are on zero antidepressants as I've been on mine for nearly 20 yes so I don't know what my brain would do when I eventually stop.

I'm finding everything makes me anxious. If the phone rings I shake, if there is something on the television that is loud or scary I shake. My nervous system is in complete overdrive.

Well done for being on zero meds. I'm wondering if another person on here would suggest you reinstate a tiny amount of antidepressant to see if you stabilise but it's such a risk as you've got this far.

Keep on pushing everyday.

I feel very tearful today but I remember that from last time. Living in hope we will get there.

[LotusRising]

53 minutes ago, Neha9 said:

there is a lot of muscle wastage happening and i am loosing a lot of weight and muscle , any idea what can help with that?

If the shaking/tremor is quite bad, you may be using more calories than you're taking in. I would try to focus on small meals/snacks throughout the day - do you have an appetite? Smoothies are an easy way to get in a lot of nutrients, while still being gentle on your digestion.

 

If you're mobile, I would stick to a routine where you walk and stretch everyday. Gentle yoga can help to maintain strength and is also great for the nervous system. I used youtube for yoga routines. You might also look up some gentle strengthening exercises online, or work with a physiotherapist who could direct you in maintaining your mobility. If you don't have access to a physiotherapist, you can find exercises/routines online for pretty much any part of your body.

 

I did experience internal tremors myself, mostly in my chest, though it was just a feeling inside my body - one would not have known by looking at me that this is what was happening. If this is similar to what you're feeling, I can offer some reassurance that it does get better. Very rarely do I experience this feeling anymore. 

 

I know it's hard to believe right now because you're feeling so terrible, but symptoms really will get better. I doubted the healing, but I have only continued to improve over the months. 

 

Please continue to reach out 💖

 

 

[Neha9]

Thank you so much for all your suggestions @LotusRising i really appreciate it.  The doctors here in india say my internal tremors are somatic and wont go away till i go back on an antidepressant or benzo. But as my body is not accepting any medicines or supplements i wanted to ask does it get better without any medicines ? I mean will the internal tremor stop or go away even if i dont take any medicines at all? All they say is that i have functional neurological disorder.

 

Is it possible that internal tremors are not a somatic symptom but a withdrawal or kindling symptom because that is something the doctors here in India will never accept. Will appreciate your guidance on this.  ♥️

 

Thank u for ur time,

Regards,

Neha.

 

On 1/15/2024 at 9:44 PM, LotusRising said:

If the shaking/tremor is quite bad, you may be using more calories than you're taking in. I would try to focus on small meals/snacks throughout the day - do you have an appetite? Smoothies are an easy way to get in a lot of nutrients, while still being gentle on your digestion.

 

If you're mobile, I would stick to a routine where you walk and stretch everyday. Gentle yoga can help to maintain strength and is also great for the nervous system. I used youtube for yoga routines. You might also look up some gentle strengthening exercises online, or work with a physiotherapist who could direct you in maintaining your mobility. If you don't have access to a physiotherapist, you can find exercises/routines online for pretty much any part of your body.

 

I did experience internal tremors myself, mostly in my chest, though it was just a feeling inside my body - one would not have known by looking at me that this is what was happening. If this is similar to what you're feeling, I can offer some reassurance that it does get better. Very rarely do I experience this feeling anymore. 

 

I know it's hard to believe right now because you're feeling so terrible, but symptoms really will get better. I doubted the healing, but I have only continued to improve over the months. 

 

Please continue to reach out 💖

 

 

 

[Neha9]

On 1/15/2024 at 9:01 PM, HelenR said:

@Neha9hi there.

Well firstly I have to eat many small meals a day rather than 3 large ones. I'm eating chicken, rice and a few vegetables. I eat a  potatoes and plain cod or bassa. I snack on a handful of Almonds and bananas every day. I do have fat free natural yoghurt daily too. Any protein will help keep your muscles from shrinking. 

Although I'm bed ridden as my legs are like jelly and my brain is in pain I do get up every half an hour and just walk around my little house for a few minutes each time.

Lady year I lost all muscle mass and got bed sores which was horrible but I'm trying harder this time to combat that.

As for the internal tremors I really don't know if they subside if you are on zero antidepressants as I've been on mine for nearly 20 yes so I don't know what my brain would do when I eventually stop.

I'm finding everything makes me anxious. If the phone rings I shake, if there is something on the television that is loud or scary I shake. My nervous system is in complete overdrive.

Well done for being on zero meds. I'm wondering if another person on here would suggest you reinstate a tiny amount of antidepressant to see if you stabilise but it's such a risk as you've got this far.

Keep on pushing everyday.

I feel very tearful today but I remember that from last time. Living in hope we will get there.

 

[Neha9]

On 1/15/2024 at 9:01 PM, HelenR said:

@Neha9hi there.

Well firstly I have to eat many small meals a day rather than 3 large ones. I'm eating chicken, rice and a few vegetables. I eat a  potatoes and plain cod or bassa. I snack on a handful of Almonds and bananas every day. I do have fat free natural yoghurt daily too. Any protein will help keep your muscles from shrinking. 

Although I'm bed ridden as my legs are like jelly and my brain is in pain I do get up every half an hour and just walk around my little house for a few minutes each time.

Lady year I lost all muscle mass and got bed sores which was horrible but I'm trying harder this time to combat that.

As for the internal tremors I really don't know if they subside if you are on zero antidepressants as I've been on mine for nearly 20 yes so I don't know what my brain would do when I eventually stop.

I'm finding everything makes me anxious. If the phone rings I shake, if there is something on the television that is loud or scary I shake. My nervous system is in complete overdrive.

Well done for being on zero meds. I'm wondering if another person on here would suggest you reinstate a tiny amount of antidepressant to see if you stabilise but it's such a risk as you've got this far.

Keep on pushing everyday.

I feel very tearful today but I remember that from last time. Living in hope we will get there.

@HelenR Thank you for all your suggestions ,  im sorry to know last year was so hard for you and ur really struggling currently too, i get startled as well with loud noises , have u ever tried brain rewiring ? i have heard it has helped a few people..im always here if u need to talk to someone , stay strong . ♥️

[LotusRising]

1 hour ago, Neha9 said:

Is it possible that internal tremors are not a somatic symptom but a withdrawal or kindling symptom

Yes, I believe they're a withdrawal symptom. I had them, mostly in my chest and still get them occasionally - they have decreased in duration and intensity as I've progressed in my healing. No, I don't think you need to take medicine for them to go away. I didn't take any medication and I've been healing just fine, albeit slowly.

 

Do you track them, as well as other symptoms, in a journal? This would be a good way to see if they're improving, or if you're getting any good windows.

[HelenR]

20 hours ago, Neha9 said:

@HelenR Thank you for all your suggestions ,  im sorry to know last year was so hard for you and ur really struggling currently too, i get startled as well with loud noises , have u ever tried brain rewiring ? i have heard it has helped a few people..im always here if u need to talk to someone , stay strong . ♥️

Hi @Neha9

How are you doing? Just checking in. My internal tremors are getting worse at the moment. No idea why. I wish I could be more positive but I have no motivation left.

I'm hoping you are seeing some improvement.

[Neha9]

On 1/18/2024 at 8:24 PM, LotusRising said:

Yes, I believe they're a withdrawal symptom. I had them, mostly in my chest and still get them occasionally - they have decreased in duration and intensity as I've progressed in my healing. No, I don't think you need to take medicine for them to go away. I didn't take any medication and I've been healing just fine, albeit slowly.

 

Do you track them, as well as other symptoms, in a journal? This would be a good way to see if they're improving, or if you're getting any good windows.

 @LotusRising thank you for your opinion i really appreciate it , infact i have been telling the doctors  here in india that i feel they are withdrawal symptoms and all they do is dismiss me and they say that you have functional neurological disorder as the shaking at the base of the head running down the entire body and the pulsating sensation (same area) is a somatic symptom and you are stressed. 

 

When this started 15 months ago and the occipital area started shaking and pulsating i tried various medicines till September 2023 but nothing  stopped it and only made things worse for me. From November 2023 till date i haven't taken any psychiatric drugs and the occipital shaking running down the body and pulsating is only getting worse...i dont know how to stop it. I keep walking all day to feel some relief but the sensation is continuous from morning till i go to sleep and i have no good windows. The doctor says if i dont take medicines this somatic symptom will never go away but since no medication is helping and making me worse i had no choice to discontinue all medicines except thyroid and allegra 180 even though im suffering.

 

I feel i am stuck as i dont know how to stop this occipital shaking and pulsating. I am trying my best not to take any medication and see of the shaking stops but i havent had any luck till date . My only worry is that i am getting worse day by day - my walking is affected and i havent gone out of the house since months now, also i have lost a lot of weight and muscle and im unable to touch any electronics like cellphone and laptop. Im housebound and suffering internally and its getting very difficulat to live like that , myworse scare is i will get bed ridden and wont be able to even walk in the house or use the bathroom on my own. 

 

Im am just looking for help as to what can stop this shaking and my other symptoms so i can stop deteroiting and get back to my normal health.. sorry about the long msg and thank u for listening.🤗

 

[Neha9]

On 1/19/2024 at 3:53 PM, HelenR said:

Hi @Neha9

How are you doing? Just checking in. My internal tremors are getting worse at the moment. No idea why. I wish I could be more positive but I have no motivation left.

I'm hoping you are seeing some improvement.

Hi @HelenR i am sorry to hear ur struggling too.. even my internal tremors are very bad and im suffering a lot too. Don't loose hope u have beaten this once and u will do it again, plz just hang in there and try and do some grounding if that helps. I know how hard this is and i understand ur pain. 

 

Sending all my prayers and healing to you. Im right here whenever u need to talk..🤗

 

Warm Regards,

Neha. 

[HelenR]

37 minutes ago, Neha9 said:

Hi @HelenR i am sorry to hear ur struggling too.. even my internal tremors are very bad and im suffering a lot too. Don't loose hope u have beaten this once and u will do it again, plz just hang in there and try and do some grounding if that helps. I know how hard this is and i understand ur pain. 

 

Sending all my prayers and healing to you. Im right here whenever u need to talk..🤗

 

Warm Regards,

Neha. 

@Neha9thankyou for your encouragement. Are you having any brighter moments yourself or are you still the same.

The mornings are definitely my worst and then again in the afternoon until approx 7pm when it dies down just a bit.

Oh the brain is such a complicated thing but I believe it can heal itself however slow. The nervous system is so complicated too. I'm hoping my gastritis will heal itself again and then maybe the gut/brain connection will simmer down.

I'm missing being outside, although it's winter here but I would love to feel some sun on my face. I live in hope.

Take care of yourself as best you can.

[Neha9]

On 1/20/2024 at 7:01 PM, Neha9 said:

 @LotusRising thank you for your opinion i really appreciate it , infact i have been telling the doctors  here in india that i feel they are withdrawal symptoms and all they do is dismiss me and they say that you have functional neurological disorder as the shaking at the base of the head running down the entire body and the pulsating sensation (same area) is a somatic symptom and you are stressed. 

 

When this started 15 months ago and the occipital area started shaking and pulsating i tried various medicines till September 2023 but nothing  stopped it and only made things worse for me. From November 2023 till date i haven't taken any psychiatric drugs and the occipital shaking running down the body and pulsating is only getting worse...i dont know how to stop it. I keep walking all day to feel some relief but the sensation is continuous from morning till i go to sleep and i have no good windows. The doctor says if i dont take medicines this somatic symptom will never go away but since no medication is helping and making me worse i had no choice to discontinue all medicines except thyroid and allegra 180 even though im suffering.

 

I feel i am stuck as i dont know how to stop this occipital shaking and pulsating. I am trying my best not to take any medication and see of the shaking stops but i havent had any luck till date . My only worry is that i am getting worse day by day - my walking is affected and i havent gone out of the house since months now, also i have lost a lot of weight and muscle and im unable to touch any electronics like cellphone and laptop. Im housebound and suffering internally and its getting very difficulat to live like that , myworse scare is i will get bed ridden and wont be able to even walk in the house or use the bathroom on my own. 

 

Im am just looking for help as to what can stop this shaking and my other symptoms so i can stop deteroiting and get back to my normal health.. sorry about the long msg and thank u for listening.🤗

 

@LotusRising Hello, hope ur doing well? i am really struggling , my whole body is getting hot and i have a burning sensation in my whole body plus my internal tremors are really bad, will u be able to plz suggest any doctor or medical practitioner who can help me with these withdrawal symptoms and kindling ? i am in a bad shape and really need help.  Plz do let me know.

 

Warm Regards,

Neha.

[LotusRising]

Hi @Neha9

 

I'm so sorry you're still struggling. I don't see any doctors on our site listed for India, but I believe Dr. Mark Horowitz does consultations. Perhaps look into this?

[Farm24]

On 2/10/2024 at 1:33 PM, Neha9 said:

@LotusRising Hello, hope ur doing well? i am really struggling , my whole body is getting hot and i have a burning sensation in my whole body plus my internal tremors are really bad, will u be able to plz suggest any doctor or medical practitioner who can help me with these withdrawal symptoms and kindling ? i am in a bad shape and really need help.  Plz do let me know.

 

Warm Regards,

Neha.

How are you doing Neha?