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Huge waves around the 2 year Mark.


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Ok, what can I say?  Huge waves are hitting me, even worse than acute. I have a strong feeling that I skipped acute in my first year and that I get it right now in the beginning of year 3.

This is unbelievable how bad I am right now. Nasseous from another level and lots of bad nerve activity in my head. Last Thuesday I had a full day window. Every single time I am entering week 3 in a month it’s freaking bad. How long did acute last for you and can you describe how that felt?

 

Since month 21,5 I am cycling from 1 wave to another. 3 months in a row now. Mostly bedbound, but can’t ran away for my responsability as a father. That means applying for jobs, moving to a new appartment. Waves last few hours now which is positive, but are brutal. Sometimes a full day.

 

I am losing my mind. Moving on with your life while it’s physically not possible. It feels double.

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All I can do is give you support And hang in there everything I’ve read you get better some people have a hard and others.
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Thanks Bluepm, I am doubting this process. Is there an end? I see a lot of people who get better the further they are out. I am the opposite. Every time I think, can it get worser? Yes it can.

 

No end in side.

 

 

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I want to be positive but some people take a long time to recover does that mean you’re not gonna wake up tomorrow and feel fine nobody knows I wish I can offer you more advice and solutions but I’m only 11 months out and I only can go by what other people have said and I’ve what I’ve read.
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Because the symptoms are so strong that it keeps me disfunctional. Don’t get me wrong I am not bedbound 24/7, but some days yes. But dizzy spells and nerve pain in my whole body is killing me to the point that I can only lie down. It’s always the question when the next wave hits. I am going from 10% to 90% on the same day.
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  • 2 weeks later...

Hopehope, I am right there with you. I hit a strong wave at 22 months! For me it seems like worse than acute! I am now at 24 months and still suffering from this wave!! I am having waves within this wave. Severe anxiety, looping thoughts, depression and crying, burning nerve pain as well as sleep issues. I’m pretty much couch/bed ridden almost 24/7. Sometimes I feel better in the evening (almost feeling normal) unless I’ve been hit with another mini wave within this wave. Then I can’t sleep for a couple of days and have symptoms 24/7.

 

For the past two years I’ve had strong waves at Month 6, 10, 15 and 18. I usually came out of them after about three or four weeks and it seemed like I was reaching a kind of a new baseline. I was never completely symptom-free just felt like I was getting stronger. The waves were not as strong on the Richter scale. Instead of them being acute like a 10.0 magnitude they were more like four or five magnitude. Until this one hit as an 11!! Very acute!

 

I am very dysfunctional at the moment. I can barely get any activities in without having severe symptoms push in. I had worked my way up to walking a mile A couple two or three times a week prior to this, now I can barely get out of the house. Any activity even just getting dressed cooking walking to the mailbox etc makes my symptoms flare!! it is just horrible!!

 

it is hard to stay positive, yes. Trying to carry on.

 

Buttefly65

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  • 3 weeks later...

Hi Sourav, thanks for asking. I still get pretty nasty waves, last night was pretty rough again.

 

One wave to another, with windows in between. The windows are very good, but the waves OMG.

Lots of bad nerve pain in back, neck, head and the rest of my body. And you?

 

:thumbsup:

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Hi hopehope and Sourhav,

 

Slow progress but somewhat better than my last post.  I feel like I’m very much in the same place as Hope hope.  I too am having windows and waves in this huge wave that started at 22 months (Feels like acute when I first jumped off my meds).  Each wave that hits last for three or four days and the symptoms are 24/7!  lots of nerve pain in my back chest area ,  along with extreme tightness throughout the whole thoracic cavity,  depression and looping thoughts. When not in a wave then symptoms are better and less intense but never gone. At least can get off couch some. Any exertion though  sets me back, walking, using my arms, even just to blow dry my hair.

 

Hopehope, I also tend to feel better in the evenings unless in a wave where it’s 24/7 for a few days. It’s just seems like a constant hit to my CNS!! I eat super clean, don’t take any supplements, nothing.

 

However, I have been researching cbd oil (without THC and hemp oil which is different). I am reading a thread on this and trying to decide if I should try it. My quality of life has been so disrupted these past two years with only managing a few activities or trips only to be thrown back into hell. So many waves. This one by far the worse.

 

Well back to couch and watching hgtv. Sigh!!

 

Butterfly65

 

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I am 2 months (almost 26 months) further in the journey and it’s not 24/7 anymore, some space of normalcy in between. This has to be the final wave people are talking about.

 

Day in and day out waves, yeah butterfly this is so exhausting. I was there few months ago.

 

Still lots of work to do and still get new symptoms. Right now my ears are screaming and nerves are squeezing.

 

Hang on, we have made it so far!

 

Ps I will start a job in a couple of weeks. Fake it till I make it!

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[87...]
So sorry you're going through this. I think one of the most insanely frustrating parts of all this is that no one can say when we will improve, how long it will last, when a wave will hit. The symptoms are bad enough but the timeline is completely individual. It can make us feel so powerless and defeated. We just want to get back to life. When I'm in a good place or window I try to practice acceptance and breathe. I'm not so sure there is much else to do. I hope you improve soon.
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So sorry you're going through this. I think one of the most insanely frustrating parts of all this is that no one can say when we will improve, how long it will last, when a wave will hit. The symptoms are bad enough but the timeline is completely individual. It can make us feel so powerless and defeated. We just want to get back to life. When I'm in a good place or window I try to practice acceptance and breathe. I'm not so sure there is much else to do. I hope you improve soon.

 

This is so true, the unknown is very hard to cope with. Same for you!

All the best. You learn how to live with the nasty symptoms.

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  • 3 weeks later...

Hi friends ,

 

Hopehope and butterfly65

 

How are you all this week ? My mental condition is severe , constant looping thoughts and high anxiety .. Accompanied by nerve pain and layer on head . Trying cbt ...

 

 

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Hi friends ,

 

Hopehope and butterfly65

 

How are you all this week ? My mental condition is severe , constant looping thoughts and high anxiety .. Accompanied by nerve pain and layer on head . Trying cbt ...

 

 

 

Thanks for asking my friend. Waves are deep and nasty, but don’t  last hours straight. It’s now half an hour pretty bad and than clears up a bit and than another 30 minutes. I have lots of symptoms which I have experienced in the last few months. I have started a new job and it’s difficult. But this phase has to be the last. It can’t get any worser than this OMG. How about you? Some window days are almost perfect even as window hours. Are you improved a bit?

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Hi hopehope ,

 

I was getting some normalcy windows but this week is brutal . Mental issues are tormenting . Dr dp , cog fog , phobia , looping thoughts , ocd are at its peak . Trying cbt . Thanks friend . Love from india .

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[b5...]

Because the symptoms are so strong that it keeps me disfunctional. Don’t get me wrong I am not bedbound 24/7, but some days yes. But dizzy spells and nerve pain in my whole body is killing me to the point that I can only lie down. It’s always the question when the next wave hits. I am going from 10% to 90% on the same day.

 

I have like this too. But force myself to do things. I am going from 10%-50%. When I was in Germany I was about 25%. Couldn't walk. Way too much head issues. Dizzy so dizzy. My brain is so sensitive right now. Hard to cope

BRUTAL mental wave. Intrusive racing thoughts really scary ones too  :tickedoff:

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Is this from short term use of 2 1/2 months?? Have you been kindled? Sending you well wishes for a speedy recovery
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Is this from short term use of 2 1/2 months?? Have you been kindled? Sending you well wishes for a speedy recovery

 

Unfortunately yes, bad luck and waves are building up. At work and hard to survive, but try to use my poker face. Don’t know when it ends. However we stay positive!

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