3 years 5 months off.

[[CM...]]

Wow. I haven’t been on here a very long long time. I haven’t even thought about this site in a long time. I always wondered why there wasn’t many success stories. I can’t say I’m a success story yet, but I have made major progress. I was one of the worst cases you’ll ever see. I tapered for almost 7 years. Some of those years I failed tapering. Had to start over again. Etc.

I just wanted to come on here and give some hope. I am more functional. I don’t have as many symptoms as before. My CNS has healed a lot. I am still damaged tho. I have been off now for almost 3.5 years. The change started happening I’d say in the last 6 months or so. I’m able to go golfing. I’m not in bed all day anymore. I’m not dying with symptoms. But I am still not healed. I’m not able to live alone yet. I’m not able to work yet. I’m not able to drive alone further than 10 minutes or so from the house. But I don’t have severe waves anymore. I am able to live somewhat of a life now. My ears still scream. Head pressure still blows up. Parathisia. Anhedonia. Fatigue. And my worst symptom is the brain fog. I just can’t believe that hasn’t gotten better. If that ever goes away I’ll declare myself healed even tho I won’t be. That’s how much it affects me. It’s what keeps my life paralyzed and keeps me from working, driving alone, etc. 

For 9 years I ate nothing but zucchini and chicken and potatoes. I had severe intolerances to everything. Severe mast cell. Histamine. Chemical and food sensitivities. Sun intolerance. Exercise intolerance. List goes on. It’s all alot better. It’s so much better that at one point I was down to 115 pounds. Im now 100 pounds heavier than that lol. I need to lose weight now. I starved my body for so many years that when the food sensitivities went away, I ate like a person who had been kept in captivity for years. Because I was. My body was starving. My brain was starving. I know I’ll lose the weight. I’m rambling a little bit but I wanted to come on here and let you know it does get better. It takes a long long time for some of us. 
Here’s to hoping and praying for true healing one day where I am symptom free and back to living an independent life with a clear brain. If anyone ever wants to talk or has any questions I am here. Truly. 

[[be...]]

Congratulations for being off, @[CM...] I see you had a long taper, but that is OK, because you are off now, and I am sure in time you will write your Success Story. I found that healing takes time and more time than we think. Things get better and then some things linger, but they will get better. Hang in there, and I know you had a hard time, and never forget that many before and after you have too, and they are now Healed and living a good life. Stay Strong.

💖 Peace and Healing.

[[He...]]

This is a great post. Thank you for giving us a very real yet encouraging version of how things go.  You're doing your best and you're making big progress.  Congrats to you and may you heal more and more. 

[[de...]]

Thanks so much for sharing your story.   Very encouraging!!!  Can't wait to hear how things progress in the next six months.   I am hoping you will see lots of healing!   Please keep us posted!

[[Ga...]]

Hello CMZ, I think you and I exchanged several posts about our histamine issues and problems with medicines and foods.  I am so happy to hear that you are doing better and getting back to enjoying life.  I have also had really good windows when I feel pretty much back to norma, and then like clockwork I overdo and eat badly and set myself back for several days.  I am now in a wave after some pretty traumatic events….on the same day my husband had to go to the ER for heart issues, our washing machine overflowed and caused a lot of water damage.  I am now having to deal with carpets, floorboards and drywall that have to be replaced.  My husband had a bout if Afib, which is now being controlled with a blood thinner.  

Again so nice to hear from you.  Keep on healing!!!!!

GG

[[La...]]

On 04/09/2023 at 00:05, [[C...] said:

Wow. I haven’t been on here a very long long time. I haven’t even thought about this site in a long time. I always wondered why there wasn’t many success stories. I can’t say I’m a success story yet, but I have made major progress. I was one of the worst cases you’ll ever see. I tapered for almost 7 years. Some of those years I failed tapering. Had to start over again. Etc.

I just wanted to come on here and give some hope. I am more functional. I don’t have as many symptoms as before. My CNS has healed a lot. I am still damaged tho. I have been off now for almost 3.5 years. The change started happening I’d say in the last 6 months or so. I’m able to go golfing. I’m not in bed all day anymore. I’m not dying with symptoms. But I am still not healed. I’m not able to live alone yet. I’m not able to work yet. I’m not able to drive alone further than 10 minutes or so from the house. But I don’t have severe waves anymore. I am able to live somewhat of a life now. My ears still scream. Head pressure still blows up. Parathisia. Anhedonia. Fatigue. And my worst symptom is the brain fog. I just can’t believe that hasn’t gotten better. If that ever goes away I’ll declare myself healed even tho I won’t be. That’s how much it affects me. It’s what keeps my life paralyzed and keeps me from working, driving alone, etc. 

For 9 years I ate nothing but zucchini and chicken and potatoes. I had severe intolerances to everything. Severe mast cell. Histamine. Chemical and food sensitivities. Sun intolerance. Exercise intolerance. List goes on. It’s all alot better. It’s so much better that at one point I was down to 115 pounds. Im now 100 pounds heavier than that lol. I need to lose weight now. I starved my body for so many years that when the food sensitivities went away, I ate like a person who had been kept in captivity for years. Because I was. My body was starving. My brain was starving. I know I’ll lose the weight. I’m rambling a little bit but I wanted to come on here and let you know it does get better. It takes a long long time for some of us. 
Here’s to hoping and praying for true healing one day where I am symptom free and back to living an independent life with a clear brain. If anyone ever wants to talk or has any questions I am here. Truly. 

CMZ how are you doing now? I’d love to hear any updates. How’s the driving going? 

[[Si...]]

did you struggle with anxiety and insomnia? if so when did they leave?

[[Id...]]

@[CM...],

thanks for sharing this ❤️

[[CM...]]

On 30/11/2023 at 10:36, [[L...] said:

CMZ how are you doing now? I’d love to hear any updates. How’s the driving going? 

I hit a wave about 2 weeks ago that’s been worse than acute. I’m hanging on for my life. 

[[Ac...]]

21 hours ago, [[C...] said:

I hit a wave about 2 weeks ago that’s been worse than acute. I’m hanging on for my life. 

Anything that you can tell trigger the wave or is it random?  

I am 3 years off and in a worse than acute wave now too after feeling pretty good this spring.  So sounds like similar boat. 

[[La...]]

On 26/01/2024 at 12:31, [[C...] said:

I hit a wave about 2 weeks ago that’s been worse than acute. I’m hanging on for my life. 

Am sorry to hear this my friend. Hang in there, it will let up. Many people have said after their big wave, they started having nice windows or healed!