grandmaD: turtle here

[grandmaD]

Thanks FINDREST for your kind words, understanding and advice.  Yes, it has been extremely overwhelming.  After typing all these notes up, I saw clearly how I have tried a dozen different meds in the last 3 years in an effort to find relief and to cope with life.  The main reason being, that with so many constant head issues, for one thing, I couldn't do everything that my husband used to do.  He was pretty much my carer, and I was thrown in the deep end. 

 

The other thing is that I thought a long slow taper over 14 years, that surely, my CNS would've healed and I could cope with other meds.  I am now thinking it never did heal and never will, as I have severe nerve type legs and feet pain which has got worse over the years.

 

I've had an x-ray recently which shows the wires are in place.  I was told they go through your artery and are glued/screwed to the heart, so they cannot be removed as it is too dangerous.  When I was in hospital I overheard one man saying one of his wires was found in his leg!

[grandmaD]

Thanks CARMIE - BIG HUGS BACK TO YOU.  Hopefully one day I'll be able to read your and FINDREST stories

[grandmaD]

March, 2023

While lying down for my nanny nap I experienced excruciating chest pain for 5-10mins which eased off after another 10 or so minutes.  Went to hospital.  Diagnosis:  Indigestion.

 

Head pressure, throbbing, constant headache, pulsing and brain shake and giddy are atrocious

 

Shoulder shudder is getting worse, affecting both arms and left elbow is very painful at times, as if broken. 

Aching down left arm, painful at times and worse from using my left arm.  Cannot lean on that arm, use it to do stuff, hang washing out, it doesn't like.  

 

Still difficult to take deep breath, feels like heaviness on chest and tight.

Noise sensitivity is still bad and issues with eyes same

 

Most recent issue is guts ache, sort of reflux, gurgling in throat and difficulty swallowing.  This comes and goes.

[grandmaD]

May, 2023  -  5mg Lamictal (Lamotrigine) x .5mg

 

This time I will start very low and slowly titrate up to get to 5mg.  That is the plan.

My hope is that it will help with head shaking, pressure, throbbing, pulsing, pain.

 

No change for 5 days. 

Then BP went very high 150/130 then dropped to 94/81 then to 155/135 and continued to be very high.

Upper backache that I didn't have before and incontinence very bad didn't have that bad before.

Guts ache, nausea and loss of appetite.

Head and shoulder issues seem worse.

Tension type headache along with the usual pressure headache and migraines.  A sort of "metal" head and "earthquake" head.

 

It did make me feel more alert, whereas other meds have made me dopey.

 

June, 2023

 The longer I was on it, the more stimulating effect it had.  This is confusing, since it is supposed to be calming and to stop cortisol production.  Yet, I felt very "wired".  There was another med I took that also made me feel like I was on "speed" (not that I've ever been on it, but imagine that is what it does to you.)  Inability to relax.

 

Insomnia - 3 -4 hours to get to sleep.  But did stay asleep and not wake every 2 hours as usual.  Jaw clenching worse.

 

I couldn't stand the revved up (which felt artifical) sensation and stopped it.  This has to be the end of "trialling" meds to see "what works".  I've tried a dozen and would appear I cannot tolerate anything.  I have resorted back to painkillers.

 

 

[littlebird]

On 6/3/2023 at 5:51 PM, grandmaD said:

Add into that the depression from chronic pain

This is so real!! I've found my most hopeless thoughts tend to happen when I'm in a bad pain flare. Really hard to remember the good stuff in life when the body is chronically hurting, especially tough when it's bad. Sending solidarity and hope you have many hopeful thoughts to carry you through! 

[Shep]

On 5/31/2023 at 9:27 PM, grandmaD said:

Alto, are you able to help me please?

 

I need help with starting lamotrigine

 

Will it help with brain shaking?

Brain pulsing and throbbing?

 

I found some notes from years ago that you had written and how it helped you ...

I have tried just about everything doctors have thrown at me that made me worse (am in process of updating my journal)

It has also been complicated through the sudden, unexpected loss of my husband, who was fit, strong and healthy, aged 67 ...

Then further complicated with unnecessary pacemaker surgery and removal 2 years later ...

 

The latest suggestions from doctor is Agomelatine or Valdoxan  which sounds good but side effects are headaches, dizzy, insomnia - which I already have!  Also affects liver.

The other one is Topiramate  which also sounds good because itss for tremor (which is what I hope to find relief from - brain shaking)

Side effects insomnia, agitation, loss of appetite and irregular heartbeat (have all these already) acidosis and kidney stones.  It increases serotonin.

 

In withdrawal and post withdrawal - is it more serotonin I need or less?  Many of the drugs I have been put on post w/d I find are stimulating at low doses and drugging at higher doses (By low doses I mean 1/4 of tablet and high doses I mean 1/2 tablet) and I wonder if this is due to the serotonin in them??

 

Your notes made sense and so I asked the doctor to delay the two top drugs so i could try lamogtrigine/lamictal.  He has given me 5mg tablets saying take half and increase gradually.

 

Your notes said to start at .5mg so that is what I have done for about a week.

 

My question is how slowly to updose?  What mg rate and what time rate?  

 

Thank you so much for your time and advice which is greatly appreciated!

 

@grandmaD I found this post in another forum and merged it in with your intro/update thread so all of your information is in one place.

 

Please update your signature to reflect the changes you've made since 2019. You may not have enough room with what you currently have, so you may want to give fewer details for the items that are 24 months or older. The first post in this thread explains what we need:

 

How to Summarize Your Drug History in Your Signature

 

What time(s) of day are you taking each of your drugs and at what dose? Please list the time of day, drug name, and drug dose for anything you're currently taking.