luv2knit

[Wildflower0214]

How's the synthhroid taper going? I am hoping getting this dose right could help you. My Mom has underactive thyroid and is on synthhroid and she was a nurse, and I mentioned your situation to her and she said that having too much of the med could really make you uncomfortable. So, I pray this decrease helps.

[luv2knit]

WF--didn't have enough to really "taper"--5 pills. I did try to cut them back some, though. I have been on the new dose for two days now. (This is the 3rd.) It turns out, unfortunately, my doc was just going by my TSH, which is NOT the way to do it, and I think cortisol is affecting everything, so I'm sure I'm going to be swinging all over the place! No obvious issues that I can relate to the change, though. Just the same old thing!

 

No sleep after about 1:30, and akathisia ramped again today. The burning never stops now, so there is that as well

[Wildflower0214]

How are they supposed to read it, if not just by the TSH? I always thought I had a thyroid issue but my TSH was always within range, but it was on the very low side of normal.

 

I'm sorry you are having to deal with all of this. I'm sure that the WD is causing all of the havoc.... It's probably messing with all of our hormones and God only knows what else....

I really doubt that you are diabetic. I have read of another lady on here, who has gotten her thyroid tested numerous times as well as hormones and they have been swinging from one end of the spectrum to the other during WD. So, I think it may be common. Hopefully, as time goes on the swinging lessens and we come back to whatever we were before all of this.

 

Xo prayers

[luv2knit]

On the thyroid, they are supposed to use Free T3 and Free T4, as well as TSH. I don't know details of how it is supposed to be done. I kept bragging on my doctor because she actually tested the Free T3 and Free T4, but this time she did not. My TSH, however, was 0.09. (I don't have it in front of me, but I think the low end of normal is 2.7.) TSH, from what I understand, though, is not supposed to mean much--especially without the other two. If I was really on too high a dose of Synthroid, from the research I did, it could contribute to quite a few of my symptoms.

 

Yeah, I know I am not diabetic at this point. My dad was, so I could end up that way. After being off Zoloft and losing so much weight, my fasting blood sugar at home was 78 a couple of months ago. It has been around 90 in recent history. My recent test at the doctor was 97. Over 100 is considered prediabetic, and I don't know at what point they would deem medication necessary. Doc didn't say anything at this point. I know it is cortisol... It just makes sense. The same thing that keeps me awake all night. I have been taking my blood sugar every morning, though, and it keeps going up. It was 114 this morning. I believe 120 is considered diabetic. As far as I know, it will not be rechecked for another year. Could be better by then, or could be worse. I don't understand why this is happening at 11+ months out, when it was normal two months ago--and in fact much better than what it was last year. At this point, though, I am continuing to take it at home, so I don't have any surprises.

 

I'm afraid they are going to end up raising and lowering my Synthroid repeatedly. (That is checked every 6 months.) I'm hoping if and when the blood sugars settle, that will too. If they keep changing me, sooner or later, I WILL have an issue. (I'm thinking this will be more likely if they raise it back up.) Right now, I'm trying to gradually change my diet over to one that should help lower cortisol. Of course, that may have no effect whatsoever. Just using the blood sugars as a guide. Awake since 1:30 this morning, and the highest blood sugar yet... Hmmm...

[Wildflower0214]

Ya, that sounds like a messy situation. I know I have PCOS, a dr told me I did and just wanted to run bloodwork to confirm. I've had adrenal fatigue for a long time, and that was confirmed in a test, but I can't take hormones for the PCOS and I can't change my diet to help my adrenals heal, so it is what it is.

 

And then there's the POTS, and I can't do anything about that.

 

I hope your blood sugar calms down. Please please be careful changing your diet. Do it slowly if at all possible. Some of the worst waves I've had have been from food.

 

Hugs. Xo still praying

[luv2knit]

Yeah, it's so difficult to be able to do anything right now... And of course, my doc still doesn't know about my WD.

 

I usually don't tend to have the sensitivities to food, but I think I may have had a time or two lately. I ate some cashews that say they might contain peanut oil, when I am mildly allergic to peanuts. Never had a problem with the cashews before, but can't figure out what it could be, other than possible peanut oil. Ate some two different nights, though, and had some additional issues both times. Also ate strawberries two days in a row and wondered if they could have caused issues, even though I've never had a problem with them before. Of course, during this time, I have been cutting down the Synthroid, but I've had some halfway decent days, outside of the days I ate these foods. I'm trying to try "new" things one at a time, so I can tell. Ugh... So frustrating!

 

Prayers. XOXO

[Wildflower0214]

I never had food issues before WD....ever. I just keep very good notes now so I can tell what is doing what and I only make one change at a time. I guess that's all we can do.

 

Well good luck!!!! Love to you.

 

Will check in again soon.

[luv2knit]

At my wits' end with this akathisia, burning, and insomnia. Yes, I have other symptoms, but these are the ones that are driving me to distraction.

[SelmaLady]

((((Luv)))  This is going to lift at some point but it would be so good if it would be soon, I know.   So wish there was something I could do to speed it along for you.  I'm pretty bad too.  We both need some relief I know.   Praying as always for just that.  xoxoxo

[luv2knit]

Thank you, Selma. I continue to pray for you as well. I actually have been seeing a few "better" days here and there, as far as the akathisia goes, but the burning is CONSTANT. I'm grateful for any breaks I can get, but it's driving me to distraction, and today has been especially bad with both the burning and akathisia!

 

XOXO

[bluebalu86]

Glad you are having somewhat better days here and there luv. Consider them tiny windows. You will see more frequent and more substantial improvements in the future. All of us will. We have to hang on till that time comes.

[SelmaLady]

The burning sounds awful.  Even tho I've only had it in small doses, I can remember how overwhelming it can be.   I'm so glad that you are at least having some lighter days with the akathisia.  It seems for a lot of us, one awful symptom can get better while another one gets worse.  What a hard hard thing to push through.  

 

Grateful for your prayers.  My brain is so very scrambled but other things are lighter (!!).  Can't focus to post much at all -- Hoping we both see some improvement in these awful symptoms....  xoxoxo 

[AliG]

 I get "burning legs" at night. I don't know how you deal with it constantly, Luv. Does the magnesium , help. I think it helps me - "a bit".  Also , showers, baths (epsom), and massage.  I totally understand the frustration of that and "insomnia". It's "torture".   We just have to keep "going through it". There is no other option. Having said that, one day we will be "Free".  Looking forward to that.   Hugs,  Ali.

[Pugknows]

((((Luv))) I have missed you. You know how awful my akathisia WAS. Yes, WAS. It's gone now. I'm still full of anxiety, but the weight is coming back on, which I needed. The akathisia kept burning up the calories, no matter what and how much I ate.

 

You are healing, Luv. The akathisia will diminish to a tolerable level, then be gone. It is just the expression of your nerves in high gear. Keep rocking in your beautiful chair, watch the akathisia slowly decrease, then poof! Love you, Pug

[luv2knit]

Thanks,BB. Yes, I hope to see more frequent and substantial improvements.

 

Yes, Selma, the burning is awful. I had it before, but it was not as widespread or as intense--and it went away.

 

Ali, I've been taking magnesium since before WD, so I don't really know if it helps. I'd like to be using more mag oil, but I had a bad paradoxical reaction a while back when my sprayer malfunctioned, and I got just a little too much. Had to go back to Square One and use a DROPPER, increasing ONE drop every few weeks.

 

Pug, I read your thread before I did my own. I wondered why DS was talking about your akathisia being gone. That's great! Did it just go all at once, or did it just gradually get better, and then leave? You will be healed before you know it!!

[luv2knit]

Well, I've had three nights in a row of somewhat decent sleep. Not pre-withdrawal by any means, and not even really good, but more back the way I was before this last flare hit. My theory was that cortisol was causing the insomnia, and the higher blood sugars I've had, and was probably messing with my thyroid, causing the change in my TSH numbers that caused my doctor to lower my Synthroid dose. My blood sugar was down below 100 this morning, although still not down to my "normal". I'm thinking I may be on to something, though. Now if I could just figure out what to do about the cortisol. I am trying to eat to at least not aggravate it, so maybe that will help. Don't know if it's possible the too-high dose of Synthroid could have affected the cortisol or not. I do know they are all tied in together, though.

 

Does anyone know what causes the burning? Initially I thought it was nerve related, but now I'm not so sure. Wondering if that is cortisol related as well--or maybe even inflammation. In any case, I put an ice pack on the back of my neck last night, and even though I was still in pain, it cooled me down some, and seemed to help for about an hour. I got some more/better ice/cold packs this morning, that are supposed to stay cold longer, and strap on. Hopefully this will help me get through until this particular symptom eases up again. I thought I could tolerate it, but it's getting to the point where it's not tolerable! My ears and genitals (TMI) even burn--and my skin even feels hot to the touch at times. Ugh!

[bluebalu86]

I'm sorry hunny, the burning sounds awful. I have no idea what could cause it - another crazy withdrawal symptom. I hope it goes away soon, as well as the akathisia. 

[Pugknows]

The akathisia lessened then went away suddenly for me.

[luv2knit]

That's awesome, Pug!!

[Pugknows]

((((Luv)))) That's the only symptom that's gone away for me, so I know you'll rid yourself of it. Insomnia took its place. The anxiety is always with me circling and waiting to land with the smallest provocation. I try to keep it away avoiding stimulation of any kind. Makes for a boring day.

[Pugknows]

Luv, you may want to try backing down or stopping the mag for awhile. I had the feeling it was either doing nothing or revving me. You can always start taking it again. I know we don't like to change things, but maybe stopping and restarting could give the akathisia a kick in the pants.

[luv2knit]

Pug,for me, that would be a big one, though! I already have insomnia. I have had that since the beginning. I have many symptoms (don't we all), but the worst for me are the akathisia, insomnia, and right now the burning is driving me crazy!

 

See, that's the problem with my nervous system being this sensitive. If I quit taking the mag, I will not be able to start it back up. I've been taking mag since way before withdrawal, though. I'm still trying to gradually increase the amount of mag oil I am using (literally a drop at a time), and even though it's not much, I can tell the difference as I increase it. For one thing, I don't have as much of the early morning anxiety/panic. Sounds like it was a good move for you, though!

[Pugknows]

I don't think the mag had anything to do with the akathisia. I thought maybe it caused my insomnia. It used to put me to sleep like a sleeping pill. Then it stopped.

 

At the end of the day, Luv, I think this WD does whatever it wants, regardless of what we do.

 

I was starting to gain weight, now I saw I just lost 4 lbs in a day. Grrrr.

[Pugknows]

One step forward, two steps back. Let's polka!

[luv2knit]

I think you're probably right, Pug. It does what it wants to do! I had thought probably the 42 lb. weight loss (so far) was the akathisia. I would just be happy to see it stop. If I don't gain any back, that would be OK. I don't want to keep losing, though!

 

Hopefully the insomnia will be short-lived for you!

[luv2knit]

Ugh... Awake since 2:45 this morning, and akathisia today is ramped sky high

[direstraits]

so sorry,luv-you are so strong to endure all this xo.

 

thanks for visiting my thread

I don't keep a journal but I wasjust going through my thread and it seems I get a short break once in a while but otherwise constant waves.

just had hoped I'd be in a better place by now-oh well

 

I read where Oskcajga said fast paxil taperers can suffer for years...God, I just can't do it

[luv2knit]

(((DS))) I feel the same way, but try not to worry about what others say, or what their experience is. I recently got a book by Baylissa Frederick (Bloom in Wellness). I believe the name is Recovery and Renewal. She says you cannot make comparisons to those whose circumstances are similar (my own wording) because your outcome could be quite different. She went into great detail on this, and it made me feel better about my 6-week taper after 20 years on Zoloft.

[direstraits]

thanks for that,luv

[luv2knit]

You're welcome.

[apace41]

 

I read where Oskcajga said fast paxil taperers can suffer for years...God, I just can't do it

 

DS,

 

Further to the advice Luv gives in response to this comment, there is absolutely no way to predict how any particular person will react to his/her taper off any drug.  There is also very little if any correlation between which drug you were on and the likelihood of having longer term issues.  Each group of taperers will lay claim to being on the "worst" of the ADs.  None of the anecdotal stuff really makes a hill of beans in my view.  There are tons of people who tapered quickly off Paxil who did fine -- the people that aren't are the vast minority and none of the so-called expert microbiologists or neurologists or "pick your favorite specialist" understand why it happens.  I've seen many people struggling long term who showed no signs they were likely to improve make a great turn very quickly and all of a sudden ramp up.

 

If you want a recent example of this just read SorrowExperts thread and most recent posts on that thread.  No reason to believe he would make the improvement he did and yet he is on the road to greater and greater recovery.

 

Critical in all of this is to maintain the hope and belief that you WILL get better.

 

Hang in there.

 

Andy

[direstraits]

thanks for your response ,Andy-I really appreciate it.

 

I did read SE' s thread and it's very encouraging.

 

this just has been such a devastating experience and seemingly never-ending it's hard to stay optimistic at times,but we have to keep going forward and believe that we will recover some day...hopefully sooner rather than later

[luv2knit]

Two nights of so-so (broken) sleep until about 2:45-3:00 in the morning. Not the best, but not the worst either. These have been followed by two days (yesterday and today) of moderate akathisia, which has lasted right up until bedtime. Burning is still pretty intense, but may be slightly less than it was.

 

Grateful for not being literally awake all night with akathisia, but hoping my stretch of having more tolerable days about every second day are not fading away. I guess time will tell.

[Wildflower0214]

Did you finish your book? I was thinking of buying it, but I'm not sure I can handle the material right now. Im glad it was beneficial to you last I heard. I'm so happy to hear of the improved sleep. That has got to be a relief. How are you doing on the new doses of synthhroid? I know last I heard you were day two into the dose down. The burning is awful, I know. I've had a taste of it. It was not fun at all. I really wish the akathasia would take a hike for you. Have you changed your diet any? I think that would help us all if we could tolerate it. It's very frustrating to know what could help, yet not be able to do any of it.

 

Prayers XOXO

[luv2knit]

I haven't quite finished the book. So far it is good, though. It's pretty easy to read so far, except there is a section on SI that I had to skip.

 

I actually had three nights before that where I had a couple of hours of broken sleep, along with a 3-4 hour (straight) stretch of sleep. I was about to get used to that. Should have known better!

 

The Synthroid seems to be going OK. Been a week now. Not seeing any symptoms I think are related to that.

 

Yes, the burning is awful, and I wish the akathisia would take a hike too!

 

I've made some small changes in my diet, but nothing major. Mainly foods that would tend to work toward lower blood sugar. Can't really tell that much difference either way. After the three nights of better sleep, my blood sugar was lower, though, and then back up the last 2 days. I'm still thinking cortisol.

 

Pretty intense storms here tonight. You may have them too, WF. Hoping they don't keep me up all night! Akathisia has settled some, so I'm about to find out in a bit.

 

XOXO

[luv2knit]

Definitely not been the best day! Thought this morning, it was just starting out a little rough, and was going to get better. Didn't turn out that way, though Akathisia has continued ramping up more as day went on.