ShiningLight: brain injury with gabapentin WD want off others

[ShiningLight]

Thanks. @Gridley the thread is wonderful because it explains it better than my MD who just makes vague references to my "lifestyle."

 

Yes Guilietta,  considering acupuncture. I decided to cut 5% tonight. No real use in waiting another 2 weeks. It's been 3 months and muscles aren't getting better. This is 4 mg per dose cut. Will update sig. 

[ShiningLight]

Very pleased to say, cut of 16 mg appears to have gone well! No real uptick in symptoms except for possible mild increase in hot flashes. I've had 4 doses since the cut now; it's been a full day. Since my legs aren't getting better, it feels so great to have movement on something.

 

I'm taking a semi-break from the site. I haven't been on here much because I'm so tired of the process right now. I really appreciate the support and people asking about me.

[ShiningLight]

Having a bit of a reprieve with the legs the past 48 hours. It feels shocking! 

 

Sun I was well enough to drive 100 miles to see Miss Saigon and back! Thought for sure my legs would pay for it Mon but they didn't. I've wanted to see that musical for 10 years!!! It was really good.

 

I've also had a little energy after work yesterday and today. This is highly unusual. It coincides with the leg tension decreasing. Nothing else has changed. Timing makes me wonder if it's due to gaba decrease or PT hamstring exercises starting to work. Either way, I'll take it as long as it lasts! 😀 

[Cocopuffz17]

4 minutes ago, ShiningLight said:

Having a bit of a reprieve with the legs the past 48 hours. It feels shocking! 

 

Sun I was well enough to drive 100 miles to see Miss Saigon and back! Thought for sure my legs would pay for it Mon but they didn't. I've wanted to see that musical for 10 years!!! It was really good.

 

I've also had a little energy after work yesterday and today. This is highly unusual. It coincides with the leg tension decreasing. Nothing else has changed. Timing makes me wonder if it's due to gaba decrease or PT hamstring exercises starting to work. Either way, I'll take it as long as it lasts! 😀 

Woohooo that is great! I’m sure it will continue! 

[Giulietta]

Hello @ShiningLight

 

What positive and happy news for you and us all. Whenever I have leg weakness and pain - which isn't fortunately all the time - I think of you. I'm glad you have a reprieve or better yet hope this is the end of this symptom or that you have seen the worse it. I am so encourged.

 

Wonderful you could meet a goal and see Miss Saigon.

 

I will be thinking of you while you are taking a break from SA.

 

Giuilietta

 

[ShiningLight]

It really is a slippery slope walking into a doctor's office. I went to the neurologist, the appointment I've been waiting 2 months for, because I wanted to ask for a few days of FMLA to help in the event that I have an awful day and am unable to work, which happens from time to time. I brought my symptom journal. I walked out with orders for a myasthenia gravis blood test and orders for an EMG/nerve conduction test. He said a lot of his patients who are very “med sensitive” like me have myasthenia gravis so he wanted to test me for it. He wants the EMG to rule out some kind of denervation problem. He is feeling that we shouldn’t just go on assuming this is med withdrawal because we run the risk of missing something because it’s been going on so long.

 

He found a previous neuro consult I had in 2013 for walking problems. I had forgotten about that. He said it could be myasthenia gravis or something because of the pattern of remissions and exacerbations, based on that 2013 thing. He also wanted to rule out Lou Gerig’s Disease (ALS). I said well if it was ALS in 2013, I’d probably be dead by now. He agreed but still wanted to rule it out.  

 

He did say yes to the FMLA, which shocked me. I think my symptom journal was helpful in causing him to take me seriously, ie went for 1 hour walk, came home, and had 3 hours of severe fatigue and muscle spasms and couldn't get out of bed. I really do appreciate this doctor for taking me seriously. Although I have my frustrations with him from time to time, he continues to be willing to help me taper at this pace which I am grateful for. And I think he does genuinely care.

It is very hard to hold on to one’s own reality in the middle of all of this. He says withdrawal shouldn’t continue 10 months later when I am tapering “ridiculously slow.” However, he also told me not to make a dose cut until I have the EMG, because I’d have withdrawal symptoms which would mess up the EMG. In other words, he acknowledges that this is freaking withdrawal. 😂

 

His thought is if the EMG comes back normal, then I have “benign fasiculation syndrome,” the treatment for this is--you guessed it, more medication. Muscle relaxants, baclofen, klonopin, etc.

 

My plan is start taking klonopin again when hell freezes over.

 

I have more than muscle twitches, I have spasticity in my hamstrings. Which I don’t think is the same as fasiculation. Anyway, whatever. Main problem remains spasticity causing mobility problems that is really wiping me out and impacting my quality of life. The PT exercises do help but regardless I am a bit of a marionette. I do think the movement problems have become WD normal. I haven't pursued accupuncture yet but if I have FMLA I will have time to.

 

Part of me wishes I still lived in that seductive, solid, familiar world where doctors are correct about medication, and where stuff like muscle problems happen, you can just be on medication forever which will fix it and you will live happily ever after, and as a pleasant side effect not have to feel stressed out.

[Giulietta]

Hello ShiningLight,

 

Welcome back. I'm glad you were approved for FMLA, that the MD is  working with you and seems to care - even if he can be frustrating at times (so can my family). 🤣 How long will it be before your FMLA is approved?

 

16 hours ago, ShiningLight said:

He found a previous neuro consult I had in 2013 for walking problems. I had forgotten about that. He said it could be myasthenia gravis or something because of the pattern of remissions and exacerbations, based on that 2013 thing

 

And they didn't test you for it between now and 2013?

 

16 hours ago, ShiningLight said:

His thought is if the EMG comes back normal, then I have “benign fasiculation syndrome,” the treatment for this is--you guessed it, more medication. Muscle relaxants, baclofen, klonopin, etc.

 

I am having more wobbly legs (sometimes  I can't stand or walk unaided) and some pain in thigh muscles - wobblies/weakness has been int he morning - less than 1 hour after getting out of bed. After doing reading on SA  - I see that this is asthenia and other members have this int heir legs. They have had EMG tests and negative results. Apologies if you have seen this before.

 

Did he say what causes it?

 

I looked up benign fasiculation and here is a brief blurb. I didn't find anything on Mayo.

 

https://www.healthline.com/health/benign-fasciculation-syndrome#causes

 

Muscle relaxants, baclofen, klonopin, etc....as needed or daily?

 

Hugs

G

 

 

[ShiningLight]

Yeah, I figured others here have been tested for it. I feel like it may cause problems with my FMLA request if I don't agree to the test. I figure I will try one needle and if it's too bad I will stop.

 

Not sure about the medication. Going to try to find other ways. In any case, not willing to be on it routinely.

[Giulietta]

On 12/12/2019 at 10:08 PM, ShiningLight said:

I feel like it may cause problems with my FMLA request if I don't agree to the test. I figure I will try one needle and if it's too bad I will stop.

 

I agree. FMLA needs a diagnosis for the reason you are requesting it I think.

 

One needle at a time is a good approach.

 

On 12/12/2019 at 10:08 PM, ShiningLight said:

Not sure about the medication. Going to try to find other ways. In any case, not willing to be on it routinely.

 

If homeopathic remedies don't help - yes - meds are worth trying if they improve quality of life.

 

On 12/12/2019 at 12:35 AM, ShiningLight said:

Muscle relaxants, baclofen, klonopin, etc.

 

My plan is start taking klonopin again when hell freezes over.

 

@Gridley and @Shep remind of the rapid habit-forming nature of ativan (I use prn for seizures and had a rough time a week ago with this) - see my thread if you want more info. For sporadic use - for ativan - you could get some idea about how frequently you could take klonopin without your body habituating to it.  Well, stupid me, I  you were on klonopin before so know this. Maybe their detailed info wll be helpful to you too.

 

Sorry not to respond until today. I didn't know you had responded to my comment because you didn't quote/mention me.

 

Hope things gong well.

[ShiningLight]

@Guilietta Please don't tag a mod in my post. I know that I'm on my own if I decide to try those types of medications. Shep spent a lot of time last spring helping me get off klonopin and it was a very dark time. I wouldn't take  klonopin again and I'm aware that people can have severe adverse reactions from just one of these pills that affect your brain in withdrawal. So it's clear to me that I'm on my own if I decide to try something.

[Carmie]

Hi ShiningLight, 

 

I’m sorry you’ve having mobility problems, that must be very upsetting for you. I hope the situation gets better soon. 

 

Sending hugs🤗

[ShiningLight]

@Carmie yes. Thanks. It's the chronicity of it that's taking much of my internal resources to cope and draining me over time.

[ShiningLight]

My EMG test was normal. I was expecting that. I'm getting tired of wasting my time in doctor's offices. It was not very pleasant that the doctor gloved up, touched the doorknob and the computer and everything else for about 10 minutes continued working, then inserted the needles in my muscles with the same gloves on his hands. He was such a stodgy idiot that I couldn't bring myself to speak up, because I already had to call him on informed consent. When I asked him to explain the procedure beforehand so I could know what to expect, he said, "I'll explain as I go." Um, how bout no?! That is totally unacceptable. I said I'd really like to know ahead of time. He looked at me, paused for a second, realizing that I was asking for informed consent, then he told me, including that it can cause some bruising or pain. I don't think he would have told me that if I hadn't asked. I think he would have told me about the bruising at the end.

 

The procedure wasn't too bad. Honestly the worst part was spending time with this guy. I kid you not. Only one part hurt significantly. The pain was similar to getting a novacaine injection for a dental procedure, but the pain ran along my hamstring. I also felt very slight weird acupuncture-type pain traveling up my leg.   

 

My MD wanted me to wait until after the procedure to make my next gaba cut. So I took my normal dose at 7 am today, did the test, and began my cut with my 11 am dose. I am taking no prisoners!!! 😂🤣🏄🏼‍♀️

 

I have cut 16 mg and am now at 288 daily. This is just under a 5.3% cut, which is 0.3% larger than last time. My hope is to keep it so the dosing doesn't become too complicated. I have to give it some thought. I think currently I'm well under the % and speed that would cause too severe withdrawal symptoms, aside from the leg problems which appear here to stay. Last cut the leg problems actually improved about 4 days after the cut, then got worse again. I will be interested to see if a similar thing happens this time.

[ShiningLight]

I've been falling due to the leg spasticity. I fell yesterday and again today. Yesterday I fell at home and I wasn't hurt. Today I am a little banged up but ok. I was walking up the stairs at the movie theater and didn't lift my leg high enough so I skimmed the top of the step, causing me to stumble. I couldn't self correct since my muscles were already contracted so down I went, popcorn and all. The spasticity in my hamstrings has improved a little since my dose cut, but it has worsened in my quads.

 

Star Wars was really good, if anyone is interested.

 

 

[Giulietta]

 

 

On 12/16/2019 at 11:23 AM, ShiningLight said:

Please don't tag a mod in my post. I know that I'm on my own if I decide to try those types of medications. Shep spent a lot of time last spring helping me get off klonopin

 

I won't do it again. I'm sorry about overstepping my boundaries. 😕 It's up to you to reach out and I hadn't thought you manage your own situation.

 

I'm glad the test is over and it was negative - so somethings were ruled out. I undestand your resentment of spending more energy and time pursuing answers to these symptoms and how to make them better.

 

Did you FMLA paperwork go through?

 

I wish there was better news for you on your spasticity.  I am thinking of you. Glad you enjoyed the film!

 

 

 

 

 

[ShiningLight]

Thanks @Guilietta, it's ok, I just didn't want to bother them with a dumb issue that I already know the answer to. 😭 Since I cut my dose on 12/19, there have been a few changes in the hamstrings so that gave me a little hope. Of course then the quads got worse... but the main thing is there *have* been some changes. I was just getting tired of mostly the same thing day in and day out and I was losing hope for change. If it's some days better and some days worse, I can handle it better I think because then there's a break to look forward to. It's back to being a little worse again today, but whatever. It's easier to take when I feel like I'm moving steadily to being off of this garbage.

 

I haven't contacted my MD about the FMLA. I'm expecting to hear from him next week. If I don't, I will email him.

[Giulietta]

Hello Shining Light,

 

I completely understand about not wanting to pester mods for advice and help when you don't need to. I feel guilty when I am besieged with a worsening or symptoms or new ones (like the cardiac ones) that generate more concern - they are all so busy. So many need help.

 

21 hours ago, ShiningLight said:

there *have* been some changes.

 

This is truly exciting and happy news. Small changes or improvements give us hope that we are on an upward trend and there is a shining light at the end of this long tunnel

 

Two steps forward and 1/2 or 1 backwards...and knowing that you are closer to being off these toxins is the positive thought to help carry us through. That thought was one of many that helped me through months of acute WD.

 

I'm glad the FMLA is moving along. It is nice to know it is there and that management recognizes you need a break here and there.

 

Do you have some time off over the holidays?

 

[Giulietta]

Hello Shining Light,

 

I am just stopping by to wish you Merry Christmas. I hope you have had a peaceful day and I have been thinking of you.  Thank you for your support and advice to me throughout the year, including your message over the past few days.  2020 will be a better year for us.

 

Giulietta

[ShiningLight]

Hi Guilietta,

 

Merry Xmas, Happy Holidays, but most of all... Happy New Year!!! I agree, hopefully 2020 will bring better things in store for us and everyone on this journey with us.

 

I'm taking a few days off next week for a long weekend!!!

 

I think I'm going to get some forearm crutches to help with the cement legs and falling. A friend at work has some and I tried them. It was amazing because it made me feel more sturdy and confident, and it also redistributed some of the weight off the cement legs, which made them feel less cementy. It was nice to get a break from that feeling!

 

I've seen some improvement with my ability to walk up stairs with this drop. There is often less of a whole-leg cement feeling going up, although as mentioned the quads are worse now.

[ShiningLight]

Super frustrating. My washer is broken so I just spent 2 hours at the laundromat, and that's it. That's pretty much all I can do today out of bed. Thanks to the fatigue and muscle problems from gabapentin withdrawal. I am lucky I was able to do that much. But it is still SO frustrating. I *may* be able to take my dogs on a 10 min walk later, if I stay in bed to rest and if I am fortunate. I feel like my life just keeps getting smaller. I am trying to accept it and settle in, but it's hard. Hoping the forearm crutches come soon because I think they will save me a lot of energy.

 

Our disabilities are significant. It's important to remember that, even though they often aren't recognized by medical professionals. I told a RN friend about my symptoms and she asked if I had been tested for MS. Fatigue, muscle spasms, etc. I don't have MS, but that was a reminder of the significance about what we are going through. Friends, be gentle with yourselves as best you can.

 

This is life at 288 mg.  

[Cocopuffz17]

That’s a huge win, getting out for multiple hours! Good work! 
 

Yes, this is the most challenging thing people will go through. It will get better! I hope the forearm crutches save you energy as well! 

[Giulietta]

Hello Shining Light,

 

What good news about having a long weekend  taking some time off to rest and not have the stress of rushing to work, running around per se at work, perambulating to and from car, taking care of domestic duties...and just plain resting and maybe enjoying walking the dogs if you are up to it. I hope the rest will give you some relief from your symptoms.

 

Let me know how the forearm  crutches go.What a good idea from your friend.  Can you rent them with an MD prescription?

 

If you have to purchase I wonder if you can find some with paisley or bright colored patterns!

 

Did you think about a cane? A friend of mine (age 78) suggested a cane to help me walk when I have vestibular issues, can't walk, etc. It had not occurred to me before. I don't know if that would also work for you in some situations.  I hope you can get a handicap placard if you drive or other things to help make your life easier.

 

On 12/28/2019 at 3:31 PM, ShiningLight said:

I feel like my life just keeps getting smaller. I am trying to accept it and settle in, but it's hard.

 

I understand and feel the same way particularly when I had agoraphobia. Maybe you can look at the things you like to do - and figure alternatives that will make them possible? Or look at things you have wanted to do and can do -  and use this time as you are able - to do them?   It is really hard to change gears when our lives change -knowing how long symptoms will last and when they will improve. It's hard to know when they will - or that they will. We keep believing that they will as they will.

 

I think I mentioned that it took me a solid 4 months for my body to adapt to gabapentin (with the same issues you faced - in addition to other symptoms). With every increase to 1000 mg they got worse. Then the acute symptoms nearly abruptly stopped.

 

Others feel isolated and that their lives may be getting smaller but they are finding some work arounds - and none of us like it. 

 

On 12/28/2019 at 3:31 PM, ShiningLight said:

Our disabilities are significant. It's important to remember that, even though they often aren't recognized by medical professionals. I told a RN friend about my symptoms and she asked if I had been tested for MS.

 

You are right. They are significant. As Rhiannon said - it is like having had a stroke. Medical staff generally don't get it - or won't admit it.  One who did get it was a pharmacist who was on cymbalta who vomitted for 2 days 'after tapering' and had to go on prozac for relief. She so wanted off these damn drugs. A therapist understands and told me of the many patients who want off.  WE are doing this. A neurologist RN admitted cymbalta was a terrible drug and admitted WD.

 

As you said to me - it's hard to think well of ourselves when those around us don't (including question what we say).  I appreciate your wisdom and truths to me - they make a difference - and hope some of my thoughts are helpful to you.

 

Let me know how the crutches work out for you.

 

How are you spending NYE? I am going to be squirreled up in PJ's, sitting with my dog  - more like laying down, reading or watching what I hope will be an interesting documentary. I have been saving it up for 2 weeks to look forward to. Lights out by 10.

 

Tomorrow is the start is another year where we continue to improve. I am going to work on thinking better of myself.

 

Thinking of you.

Hugs

Giuilietta

 

 

 

[ShiningLight]

Happy New Year to all my friends at SA!

@Guilietta My forearm crutches were under $40, I got them at Amazon. They just came today. I used them when I went for a walk with the dogs. I had a dog on either side of a crutch lol. It’s taking some energy to get used to them. I hope that when I’m used to them they will save me energy. I do feel more stable using them. I don’t lean that hard on them but use them more lightly as an extra support.

 

My MD diagnosed me with benign fasciculation syndrome. In his note he says patient thinks it’s from withdrawal and it would be rare for drug withdrawal to cause this. 🙄 We can agree to disagree on that. Actually I didn't bother bringing it up.

 

He wants to send me to more PT. I told him ok but if you send me to PT it needs to be during work hours so I can have the same amount of time in the evening to rest because it’s too much. He said he would give me 16 hours of FMLA a month. That works for me.

 

He’s always taken me somewhat seriously, but I’ve seen a greater improvement in this after I gave him my symptom journal and after I told him about my falls. I had debated telling him about my falls but he ended up being kind about it.

The past two days have been particularly bad with my legs and the muscle spasms. I’ve been in a lot of pain which has been frustrating. My left forearm cropped up as a new spot for muscle spasm and I think I pulled a hip muscle doing the PT exercises, so I am in low back/hip pain.

 

Even though I’ve been feeling bad, I’m still enjoying having a few days off. I went to coffee with a friend today which was nice. I'm just enjoying not having to do a lot of stuff. It's a nice way to start the new year. I think I've found a new tradition! 😀

[ShiningLight]

OK, I am ecstatic! After 6 weeks without a washing machine and multiple repair "mishaps" and the resultant fury due to manufacturer corruption (nobody is that incompetent), I bought a new one and it is being delivered TOMORROW!!!!! 👗🧦👖👙

 

This just barely saves me from another trip to the laundromat. I bought it Sunday. The salesguy said no way would it be on the truck to be delivered Saturday, but he humored me and reserved me a delivery slot at my insistence. And it arrived at the store yesterday!

 

[Giulietta]

Hello there!

 

What a happy note - for you and the rest of your friends on SA. You have:

crutches that will make your life easier once you acclimate to them

• a diagnosis and admission that the symptoms could be WD related - did the MD give an estimate of remission?
• a new washing machine....!!!
• FMLA time
• Seems like your dogs appreciate walking with the arm crutches too
• Coffee with a friend is a happy way to start the new year.

 

If it were me I would not mention the falls....that raises all sorts of flags and may be potential visitors to your house to assess 'safety' of your flat. But that is just my thought unless you think it is a diagnostic tool.

 

Sorry about the new locations for cramping. I get them in my triceps too.

On 1/2/2020 at 11:19 PM, ShiningLight said:

I don’t lean that hard on them but use them more lightly as an extra support.

 

Good idea. I would get extra 'lessons' if you feel like you are straining to use them. Even though you probably know this - you could cause muscle strain - the fore arms? - when using them improperly.

 

On 1/2/2020 at 11:19 PM, ShiningLight said:

I’m still enjoying having a few days off. I went to coffee with a friend today which was nice. I'm just enjoying not having to do a lot of stuff. It's a nice way to start the new year. I think I've found a new tradition! 😀

 

Awesome! Simply doing more of what makes you happy - like a few days of 'not having to do a lot of stuff' is important when you aren't feeling great. And you have found a great tradition to start a new year. Usually companies want to push us right back on the spinning wheel after a few days off.....

 

Hugs,

Giulietta

 

 

 

 

 

[Giulietta]

On 1/2/2020 at 11:19 PM, ShiningLight said:

My MD diagnosed me with benign fasciculation syndrome

 

I went back and looked this up to learn more. Did the MD ascribe this to trouble standing/walking (and possibly imbalance)? I think I have read that you suffer from this too.

 

Benign fasciculation syndrome from reading about it seems consistent with symptoms (mine too as I have these). Ironically - they treat BFS with anti-seizure meds. Ididn't see benzos called out in the article I read (wikipedia). I honestly could'nt find much online about it. Neurology Journal indicates that LITTLE research has been done on this.

 

It is said to CAUSE anxiety. No wonder.

[ShiningLight]

I don't know if I already said this but it's Cramp Fasciculation Syndrome, which is a bit worse than BFS. And yes, it's due to the withdrawal. Since gabapentin can treat cramp syndrome, it makes sense that withdrawing from this dastardly chemical can cause cramp syndrome. Not just cramps, but spasms for me.

 

Can anyone recommend a book that talks about spiritual emergency, dark night of the soul, etc? Not religious. Looking for a relatively easy read (not too esoterical) with some comforting words. Thanks.

[Giulietta]

Hi there....

 

I looked this up and on NIH found that prednisone (another fun drug) has been used to treat. https://rarediseases.info.nih.gov/diseases/6205/cramp-fasciculation-syndrome

 

"Treatment with carbamazepine, gabapentin, lamotrigine, or pregabalin (medications that reduce the hyper-excitability of nerves) was described as helpful in improving symptoms in individual cases. Immunosuppressive therapy (e.g., prednisone) has been used to treat cases of CFS that did not respond to other treatments.[3]."

 

There are .7% of women who are affected by this - but it says nothing about WD in this number. So, little is known.

 

Although I am not discontinuing gabapentin - I am also experiencing this symptom though not as acutely as you.  Both drugs act on the GABA receptors...

 

The only book in this category that I can recommend is The Power of Positive Thinking by Norman Vincent Peale. I don't remember if/how it contained any religious bits - but it has over 5M copies in print and is still a NYT Best Seller.

 

I am sending positive thoughts to you.

 

Hugs,

G.

[Giulietta]

Hello ShiningLight,

 

How are the new arm crutches working out for you? I thought of you when I saw a friend with her cane this week. She is about my age and it really makes her life a lot of easier.

 

Are your legs feeling a bit better?

 

I hope you have found an inspirational book.

 

Hugs,

G.

[ShiningLight]

Hi @Guilietta my legs are very slightly better. The forearm crutches are sitting in the back of the car. I am just trying to walk more carefully. I'll see what the PT thinks when at some point I get an appt. The course of the leg problem fluctuates. It's always a crap shoot. But I will say, I had about 10 days there that it was pure torture. It's better than THAT now.

 

Sadly I can't tolerate prednisone. I don't feels safe trying any other medication.

 

I had a pretty active weekend, as compared with my new normal of hardly doing anything! Went to get a new washer since I'm returning the one I got due to poor performance. Then I took the dogs for a long walk. That was Sat. Then went to a film festival and the store today. This is the most active weekend I've had in a long time.

 

I'm delaying my next cut until I feel a little more ready. It was supposed to be this week. The nausea resurfaced for awhile and the neuropathic cheek pain is making cameo appearances as well. So I don't think I've quite adjusted to my last drop yet.

[Giulietta]

Hello @ShiningLight

 

Happy end of January...hope you have improved a little bit since your last post. Did you make a decrease since Jan 12?

 

I took a mini-break from SA which is why you didn't hear from me. Have been in the dumps but trying to have positive expectations .  I have it written down on a blue sticky in my neatest printing on my desk.  A lot of symptoms and walking/imbalance/dizziness related issues. So tiring.

 

Have you needed to use your arm crutches or are they  still in your car ? I often think of how you are managing with them and if they are helping you . That is a good sign if you have confidence you will not need them if careful (hence they are in your car).  

 

On 1/12/2020 at 9:26 PM, ShiningLight said:

Sadly I can't tolerate prednisone. I don't feels safe trying any other medication.

 

Sorry you can't take pred - people who take it for RA, Schleroderma, , MS, etc. (whom I know) have to deal wtih a lot of side effects and have to get off it and to more expensive meds.  And about other drugs - I feel the same way. After this experience I dont' want to try anything new or make any changes to my current regimen. However - the current vestibular situation (?) is getting to the point where I may have to do something.

 

On 1/12/2020 at 9:26 PM, ShiningLight said:

I had a pretty active weekend, as compared with my new normal of hardly doing anything! Went to get a new washer since I'm returning the one I got due to poor performance. Then I took the dogs for a long walk. That was Sat. Then went to a film festival and the store today.

 

Wow! You must have been exhausted after the weekend. Sorry you had to  exchange the washer! What a pain. Don't mfrs put these through any kind of QC? Does the new one wnork? 

 

I am glad the doggies got a nice walk. Mine is so happy when I take him for a little walk - he has short legs.    We have had some decent weather so this is good. He doesn't care for cold and wind. You seem to like films. What did you see?  Do you like to watch the Grammy's? 

 

I am not much of a film goer. The last movies I went to theatres for were Star Trek. I wish they would make a new one. Othewise I watch (occasionally) series on PBS.

 

I made a decrease (after 12 weeks on 2 beads to 1 bead) on 1/5. Would really like to see a window.  Well--like I say - positive expectations.... 😁

 

Let me know how your drop went....

Hugs to you,

Giuilietta

 

 

[ShiningLight]

Hi @Guilietta congrats on your dose reduction!!! I hope you dizziness etc improves soon. No fun at all.

 

I had a nice window of almost normal legs for about a week. It was amazing! I cut 8 mg on Jan 23 and the legs got worse immediately. I started the cut on the last dose of the day and woke up with worse legs the next morning.

 

I haven't been around SA as much either. Sometimes it feels like at a certain point it sucks chronically and there's not much more to say about it.

[Giulietta]

Hello Shining Light!

 

Congrats about the drop!  You will improve and its progress. Doesn't every decrease make you feel good even though there is an uptick in symptoms. Let me know when they disappear.

 

When I made my cut to 1  bead - I had  already had 10 weeks of imbalance and dizziness, etc. already - but the consensus was that if I kept waiting, I'd never get off this poison. So - like you - I made the cut anyway.   Things are a bit worse - more frequent - but  we're that much closer to freedom!!!....   

 

This does suck - I keep wondering what new symptom is lurking around the corner (even though I keekp telling myself to have positive expectations!).  🤣 I honestly wake kup in some state of fear wondering iff I can walk!

 

I see the ENT this afternoon and need to follow-up with the neuro. She suggested something interesting about tapering - which I will mention in a sekparte email.

 

On fun stuff - I would like to meet a friend for coffee and use my old laundry machine and I am  just happy it works. Really happy. I'll be thinking of you with your new device. I bet your clothes come out cleaner too.

 

Giulietta

 

 

 

 

 

 

 

 

[Carmie]

Hi ShiningLight, 

 

It was nice to read that you’ve had a really good window for a week. Just focus on that, if you’ve had a good window there will  no doubt be more of those to follow. When we’re in the midst of waves it feels like it’s never going to end. No matter how long I’ve been in waves they always eventually come to an end, even if it was months later. I remember once years ago I tapered too quickly and it took me about half a year to find some equilibrium again but I got there. 
 

Sending hugs🤗

 

[Giulietta]

Hi Shining Light,

 

I hope you are enjoying a window and your legs are better since your cut on Jan 23.

 

If you pop on - would you ping me about how you are doing both in general and with your legs (and other limbs?).  I am having a bad time with it.  It has been unrelenting since September and incapacitating at least 10 days a month.   I sent you a PM as well.

 

Thanks and Kindest wishes,

Giulietta

[ShiningLight]

Hi @Carmie nice to hear from you! Sorry I didn't reply sooner. It seems I'm very busy doing a whole lotta nothing. Actually it's been a whirlwind of home repairs since December. Amazing how much time and energy that takes, even when hiring someone. I just had the new roof put on! 😲 I am so proud of myself. I chose the company myself and I'm happy with who I went with and feel very good about getting it done, though it was a significant expense. I'm also having some electrical repairs and getting a new water heater. I hate doing it all at once like this, but with the issues there were, it also kind of made sense.

 

I seem to be doing relatively well at the moment, finding my way down and listening to my body. The legs are still an issue of varying degrees and so is withdrawal but my body seems to have fallen into a routine with it. Things are tolerable most of the time. Tolerable and working is a huge improvement from where I was a year ago. Hope you are well, I'm going to pop on over to your thread!

 

@Guilietta sent you a pm.