Recovery
 

I have wanted to post this for a while, and I thought today is the day to share a small triumph with everyone. As most of the forum knows, I had a bodywide SF neuropathy most likely due to a monophasic autoimmune illness. Aside from the pain aspect, and all it entails, I had very frightening autonomic issues.

I had fleeting autonomic instability such as agoraphobia, palpitations,shakes,malaise,fatigue,elevated BP,anxiety, and so forth. All of this stuff was much worse than the pain from the PN, as I felt like my life was completely out of my control.

I just wanted to say that I have had alot of improvement in this area, and haven't had a panic attack in along time now. My BP is also under control, and I am feeling alot better. Better than I have felt in 2 years. I don't know if the continuous improvement in my overall health is linked to continuous recovery in my autonomic system.

The 2 things that I have been doing different are the following;

I have had about 6 vists to the osteopath and he has eleviated alot of pressure in my neck from a bulging disc. This has helped the headcahes and flushing.

I also read Mrs. D's thread on the benefits of thiamin and I began taking 200 mg every morning.

Since the osteopath and the thiamin, I have noticed the greatest reduction in autonomic instability, and overall improvement to my health.

So I thought I would share this with the forum,as it is a small step, but has given me back "quality of life", which is something that has eluded me for so loooong!

That's wonderful news! Any improvement is good but the things you described are difficult to live with. I was diagnosed with severe anxiety so I know what it is to live with that aspect of what you were going through. It does have a massive effect on the quality of life.

Hey there
 

sugar pie,this makes me happy,they say i step at a time,so you
took two!!! And Anxiety and panic attacks are the pits,don't forget
the fruite flys are gone as well. Keep it up,i always like good news. :D Sue

Yeah!! Good news is always welcome.

Glad your feeling better.

Take care, Melody

Thanks guys!!
 

I just wanted to post that there is hope with PN,and life after PN. I was affected very profoundly by PN,as every nerve in my body malfunctioned from head to toe! The incredible pain was unremitting, but I learned to live with pain.

When the autonomic symptoms hit, I felt the true wrath of this illness. I swear to you guys I thought at times I was a gonner for sure. It was my faith in God and the support of this forum that got me to where I am today,as it gave me strength to carry forward and continue to hope.

I think it's important that those of us with marked improvement post any recovery and any tips for recovery,as there are many new members on the forum. As I read throught the posts, I recall back to my early days when I was full of questions,confused and very often frightened.

I think that any one's recovery is great hope for all of us. In my case, I have had marked improvement in my overall pain symptoms, but as I said the greatest improvement and the most noticable is the lack in autonomic dysfunction in relation to anxiety,BP issues,and malaise.

I have been equal to anything lately,and I am here to say that I survived PN.
Though I continue to try to heal and improve... it is a long road... as we know.

For all the new members... Welcome to a great forum. Please try to follow the diet and nutritional advice offered in the stickies in relation to what you should be eating, supplementation,exercise,fresh air, and avoidance of toxins and toxic people.

Don't ever loose HOPE.

Great stuff Aussie, that is fantastic news and i am so happy for you.:)
Your absolutely spot on, a post like this can give inspiration to others especially to the newer members that are new to all this.
all the best
Brian :)

It's wonderful to hear such news. Great!

None of us is guaranteed repair, but it can happen over time when the cause has gone or been removed. Even some central nervous system improvement can come over many months and years.

rose

hmmm maybe i should move to australia

that's great nrews . . .
 

for more than one reason. The improvement must really feel great - - but the kicker is that maybe you have stumbled upon the cause of your PN . . . thiamine deficiency. If so, you will keep making improvement and you will know what you need to do from here on out.

rafi

I always love to hear improvement stories--
 

--for completely personal and selfish reasons, LOL.

I'm glad your autonomic symptoms have improved markedly. In a lot of acute onset neuropthies, the healing process recapitulates the damage process, such that what is last damaged is last to heal, and it can often feel like the original damage process; I always wondered if your autonomic symptoms were part of the process of your autnomic system attempting to re-wire itself after damage--damage you may not have noticed as much originally as you were dealing with all the OTHER symptoms. (Admittedly, this is more speculation than certainty.)


Thiamine deficiency can in some cases casue an acute neuropathy, but with the body-wide distribution of your symptoms I'd more likely suspect an autoimmune molecular mimicry process, too (especially since you did not seem to experience other symptoms of a fairly sudden thiamine loss, such as dementia/mental status changes or ataxia). Still, many times additions of appropriate supplements give our bodies more raw materials for healing, even if we were not technically deficient perviously. And if they reduce symptoms, they are well worth it.

This is wonderful... Progress !
 

I am so glad for you. Since you find the thiamine useful, it is pointing to a
thing you should always watch. The enzymes that use thiamine also metabolize alcohol and some drugs (antibiotic metronidazole). So if you have a genetic weakness in this system, you need to watch alcohol consumption as well as vinegar, and the few drugs. You may have to increase your thiamine to accommodate the things you consume.

Some drugs deplete thiamine:
Lasix (furosemide) and other diuretics
Sulfa drugs
most antibiotics
Zonegran (an anticonvulsant)
Theophylline

I think everyone on this board should try thiamine...just because it is so simple, and can work. It is not expensive or dangerous in any way. And it does work (works for me). Especially for burning type feelings.

I am so glad you are feeling better. That is what this board is for!

Great!!!
 

I wanted to read this thread first to see who had recovery. Not to see how they did (that came later :) ) But to see who. And it's Aussie! Wonderful, Wonderful, Wonderful!!!!

And I'm so glad it was so easy to do for you. I'm just sorry you had to suffer so long. This is wonderful news and a great way to start my morning!

Billye

It's always great to hear about improvements Aussie. Keep it up!

Nice to hear...
 

such good news. I hope there's lots more to come.

Congratulations Aussie!
Great news to hear that you are recovering and continue to do so. All the best for a steady and continued improvement.
Alkymst

Thank you everyone!!
 

I appreciate your well wishes and encouragment. I thought it crucial to post regarding my recovery, as I was profoundly affected by this illness. I hope and pray that there are more members who experience an ease or recovery of their symptoms.

Thanks to all!

This is news I am so thankful to read about - someone having positive results/improvement in their condition.

MrsD suggested B1 to me late last year and I have been taking it ever since then. It really does help the awful burning we get in the feet. I take 200mg in the morning and 200mg in the evening.

Congratulations!

Keep us all posted on how it goes over the long run. Just because you are better, don't ditch us!!:D

It is wonderful to hear you are doing better and life is returning to normal for you...just ease back in.

Aussie, it is soo good...
 

to hear that something good in your medical life is happening!

You have earned that improvement and deserve it truly! :hug: ! - j

It's well known that when someone is healing from an injury or illness certain vitamins and supplements greatly aid in healing and can even speed healing. Vit C, E, Calcium, etc. So it would make sense that vitamins that affect the nerves and such would have the same effects for healing damage to the nervous system. So you're right on about the raw materials even when there isn't a known deficiency.

I'm so happy for you and wishing you continued relief.

Hi Aussie99

I am very pleased for you and hope very much that the improvement is permanent.

Maybe I missed this in another of your postings but I would just like to know when you started with the thiamine and have you kept it at 200mg all the time?

Tony

Tony, I started on thiamine about 2 and a half months ago.
 

I started taking 200mg every morning. I was having autonomic instability, and consequentially every time I had a meeting or went somewhere crowded,my autonomic system went haywire and I was becoming very ill. I needed to take xanax just to cope, and I was still not cured. I was living in dread.

After I started the Thiamine, I had a mandatory business meeting. I had to sit in a crammed boardroom full of people for like 8 hours straight. I didn't flip out once,and I was also very social. Did not need any meds,and did not get sick.

Normally I would be hiding in the ladies room sick as dog counting heart beats, sweating and nauseous. The illness really had a hold on me.

It was so obvious that I was recovering at that point. I had more and more
situations that were similar, and my health was normal. So I thought I must post on the forum and let everyone know about my discovery. I have had autonomic problems for over 2 years now,unexplainable.

I have a bit more time to write now.
 

With this illness healing is a very slow process,as we all know we have to look back retrospectively to notice any improvement. With my situation, that day in the boardroom was a milestone day. I knew that things were very different for me and I must have had considerable healing since starting on Thiamine, in order to bear that situation.

I knew my autonomic system had been damaged by PN, but the symptoms were fleeting and hard to prove,as is the PN in general. Being stressed sent off a chain reaction of events in my body that affected me systemically. I was unable to handle even tiny amounts of stress. Symptoms included palpitations,elevated BP,anxiety,flushing,malaise,fatigue,trouble breathing. Consequentially I became agoraphobic because I was afraid of making an *****
out of myself in public,and then I had additional panic and anxiety from social phobia.

Everytime I was in public or in a setting where I was far from my comfort zone I would become quite ill. I was full expecting to walk into that meeting and get sick,and wind up making up some excuse to leave early. But it didn't happen,and it hasn't happened since.

Now am I certain that it was the Thiamine? I don't know? All I know is that I have been a very ill person who finally felt a bit of relief.