☼ Wildflower0214 Effexor WD and PTSD

[Wildflower0214]

That's really interesting that POTS is turning out to be an autoimmune disease. There's a functional medicine nurse practitioner here in Franklin who is supposed to be amazing with AI issues. Hint, hint . She would say it is totally a gut thing. She had lupus herself at one time. If you have POTS, that may be more where your problems are coming from than withdrawal, it's hard to say. And then PTSD...you so have your hands full! I wish it wasn't so hard!

Ya, I'm sure POTS is probably a gut thing. I wish I were well enough to even make it to Franklin. . Glad to hear she is there, for future reference. But, I don't think what is going in here is really the POTS, I think the POTS makes me more sensitive and causes food issues which have all been exacerbated by WD. I have never in all my life been this ill or had these issues with food. Not even close! The worst I ever had was rapid heartrate after too much birthday cake. lol The problem is I know this sounds ridiculous, but I'm too sick to get treated for anything whether it be POTS or AI...etc. Changing my diet by doing a week trying to eliminate problem foods is what made me so sick and made WD really kick in. It's a mess.

 

The PTSD, I actually got that diagnosis in the beginning of WD. And although I do have trauma in my past, I think that the drugs and WD blew it entirely out of proportion. Plus, even if I had it, I'm coming to really resent labels. Lol So I've undiagnosed myself. but, yes the POTS and the trauma and the WD has certainly made for one big crap storm.

 

Thanks for checking in on me and for the encouragement and support and good information. It is always very appreciated.

[Wildflower0214]

God, I really am scared this is never going to freaking end!!!!!

 

How the heck can I get better if I can't EAT!!!!!!

[WiggleIt]

Hooray for UNDIAGNOSIS!!!

 

I'm sorry about the food, truly I am. At least there are healthy foods on your tolerable list.

 

I really do understand the frustration of wondering if you will get healthy when you can hardly even eat. I'm starting to partially regurgitate food and hope it doesn't turn into full-blown regurgitation. It's even happening with smoothies. The smoothie starts to go down my throat and then something happens once it gets to my esophagus, like a spasm, and then it starts coming back up.

[luv2knit]

Sorry, WF. Praying you find some new food choices!

[pug]

I am sorry Wildflower that you are suffering so much. I truly hope some comfort and relief will come your way quickly!

[jen84]

Im happy for you that you got out socializing without feeling like a basket case, this is great progress!

[jen84]

Argh! I feel silly, I was reading your post and you had had such a great time with your neighbour and I wanted to post something. Little did I know that it was from a while back. I hope you get some peace soon.

[Wildflower0214]

Pug.... Thank you. I just want it to end!!! I just want to eat

 

 

Jen, thank you. Yes, it was a brief window of feeling a bit normal. I had almost forgotten it. Thank you for reminding me.

[Wildflower0214]

Well, the more I read about Mast Cell, the more it scares the freaking daylights out of me.

 

I really believe something is going on with my food situation, but I don't see how it can be fixed in the state I am in.

 

I found a doctor who knows about that stuff, but all doctors have done is disappoint me and make me sick. I don't know whether to even try to call him.

[Frustrated]

Boy do I understand being let down by doctors. I really sincerely hope and pray you can find some sort of help that is useful and makes your life better.

[SelmaLady]

WF,   How nerve wracking to try and sort through what's a "real" disorder from what's a "phantom" symptom from the psych drugs.  I do know of several people who have had to contend with really bad food allergies after a fall out with psych drugs, especially benzos.   I was friends with a lady who, after c/ting a benzo, went through years of horrible allergies to all sorts of things and intense anxieties.  And another lady who also c/t from a benzo spent 3 YEARS in a corner of her house because she would have horrific reactions if she ventured from there except to the kitchen and the bathroom.  Her then 6 year old daughter had to take care of her.  Both of these ladies are leadin 100% normal lives now...  

 

We do know that w/d and paradoxical reactions to drugs can cause all kinds of strange things that seem to be pointing to devastating illnesses when in fact, they're "only" pretenders.  Have you been dx'd with Mast Cell ever?  Not that that would mean much....Is there a definitive test for it?  I know you said that the POTS is an indicator?  Or did I misunderstand?

 

(((WF))  If you had never had psych drug exposure/w/d, then I would think that all these strange reactions should be looked at really closely.  But with a CNS upheaval, I don't think that any "normal" dx of what we're experiencing can be accepted without documentation from reliable data.   Maybe the "new" doctor would have some understanding of  how the body reacts to drugs???  Wouldn't that be wonderful? 

 

Just wanted to say too, that my older sister (74 years) has been anorexic since she was 12 and has had all kinds of strange food restrictions all those years.   She rarely eats more than 6-8 foods for extended periods of times.  All of her restrictive foods are healthy and I guess that's why she is still VERY healthy today, walking all over Portland (she hates cars) still employed working as a legal investigator for court documents  (so mind is sharp too!).  

 

We probably don't need to eat the extended variety of food that "they" tell us to be just fine.  This is all going to resolve in time, WF.  Praying for hope to be restored and for peace for peace of mind.   Love you.

[Wildflower0214]

Frustrated, I know you know how it feels!!! I just don't have the energy to set myself up for a let down. it is all so stinking frustrating!!!! Ugh!!!!!! Blaaaaaaa!!!!!! (That's me having a fit) lol

 

 

Selma, well I have POTS and the research says that many people with POTS have this. And now, looking back at how I reacted to certain foods makes me wonder. Also, there was a long time when I never reacted to medication whether it was antibiotics, OTC, supplements....anything you can think of. Then right before I ended up on meds, I started having weird reactions for no apparent reason. And this was all before medication.

 

I have no idea what is going on here. I know WD is def causing most of this, but I sometimes wonder what the heck else is going on.

 

I'm reluctant to see a dr.... I guess I'm scared crapless of getting a nutritional deficiency. And, I know it is prob harder to get one than we think it is.... Like you said.

 

I'm just a mess and I want to eat!!!!! I'm scared and I feel like I'm helpless and have no control!

 

Thank you so very very very much for your response to me. It was so thoughtful. I'm so scared. You made me feel better. Thank you. Love you too. xo

 

Oh! Forgot to answer your question, no I have never been diagnosed with Mast Cell... Getting a doctor to acknowlege it even exists is like pulling teeth, pretty much the same experience I had with getting a POTS diagnosis. I finally got it 16 years ago.... And to this day many doctors think it's non- existent.

[bluebalu86]

Trying to get our health issues sorted out and attended to is a monumental task. I wish you much luck. I'm greatly disappointed in doctors too, so I understand the frustration. I wish you all the best, peace, healing and relief soon 

[Wildflower0214]

BB....

 

Thank you, it is such a huge task and makes me tired even thinking about it. Doctors scare the crap out of me. It's hard to go to someone for help when you are frightened of them.

[bluebalu86]

I know... I hate doctors now. The only one I don't hate is my dentist, but I'm too sick to go get my teeth fixed. All other doctors are monsters and killers in my eyes. 

[Wildflower0214]

Well, it seems POTS is back for sure, but worse....

 

Taking a hot shower now induces dizziness and feeling like I'm not getting enough air

 

Lifting hands above my head to shampoo hair increases said dizziness... And feeling like I will faint, limbs feel heavy, and I feel weepy (which is a new add on).

 

All of this is unfortunately familiar, except now the intensity is much much worse.

 

It used to be annoying, but I tailored my life around it and made it work. It only became debilitating if my lifestyle veered off course and I wasn't taking care of myself.

 

Now its awful.

 

Oh, well... Not much to do.

 

I hate this because I can't blame this all on WD and I know I'm gonna be left with some level of this even when I heal. I just don't know how severe it will be.

[luv2knit]

So sorry you're suffering, WF. Chances are pretty good, though, that a lot of this is withdrawal. Even if you were to be "diagnosed" with something right now, it might not be an accurate diagnosis, because every system in your body is being affected by withdrawal right now.

 

Praying you can get some relief from some of these issues soon!

 

XOXO

[Wildflower0214]

I would feel the same way if I were diagnosed with something new during this time. But the pots diagnosis is 16 years old and I just don't want to come out of this any worse than I was

[Wildflower0214]

You know the thing that makes me upset, that the people you see go on from this, many of them have lingering issues. And, it seems like many of them never go back to work and spend a lot of time and money on naturopaths, organic food, supplements, ongoing therapy.... Etc.

 

I have aged parents and they are the only reason I'm not homeless. I don't have a never ending supply of money to obsess over my health for the next ten years.

 

It makes me really upset, because I read all of this stuff about some people and makes me wonder .... How better would they be if they actually had to go back to work and had the stress of paying bills again?

 

It scares me..This can't go on forever. I have to go back to work at some point.... Not ten years from now either.

[luv2knit]

I am on FB pages where quite a few seem to be returning to work/school after a couple of years or so. Still others are many years out, and appear to be living completely normal lives. I don't know at what point their recoveries took place. I'm sure it probably varied. Some of them appeared to have it pretty rough in the beginning, though, and still recovered. I keep trying to tell myself if they can do it, I can too.

 

XOXO

[Frustrated]

I lost my career long before WD because of whatever this underlying issue is. That is the only reason I made it through the last year of WD. I pray I find the cause finally so when My WD goes I can work. I understand where you are coming from. My kids and I don't have half of what we did. It sucks and it is very scary to count on disability to pay your rent.

[Wildflower0214]

I am on FB pages where quite a few seem to be returning to work/school after a couple of years or so. Still others are many years out, and appear to be living completely normal lives. I don't know at what point their recoveries took place. I'm sure it probably varied. Some of them appeared to have it pretty rough in the beginning, though, and still recovered. I keep trying to tell myself if they can do it, I can too.

 

XOXO

Well, I surely hope so. It scares me. Inthink about it every day. It's hard not to. Thank you for the positive feedback. It seems I have to hear it over and over! I think we are all like that to some degree.

 

Xoxoxo

[Wildflower0214]

I lost my career long before WD because of whatever this underlying issue is. That is the only reason I made it through the last year of WD. I pray I find the cause finally so when My WD goes I can work. I understand where you are coming from. My kids and I don't have half of what we did. It sucks and it is very scary to count on disability to pay your rent.

It is very scary to be here in this. And, I know you are responsible for children which increases the burden. I cannot imagine. I have the upmost respect for you. I really do. I guess we have to believe we will get better. So very hard some days.

[Wildflower0214]

You know I am tired of eating the same food and hungry when I open the container to the dog treats and they smell appetizing.... Like smokey beef jerky. If I could eat them without getting sick, I would.

 

Never thought I would fantasize about dog treats.

 

Unbelievable.

[Wildflower0214]

Awake! Zero sleep.

 

I don't know how much longer I can keep doing this.

[luv2knit]

So sorry, WF. My sleep has been (much) worse again too. Awake off and on until 2:00 a.m., and then zero. Better than nothing, but not near enough

[SelmaLady]

(((WF)))  Of course in time your sleep will return but its the getting through til it does.  I so wish I had some wonderful insight in how to get through this!   All I can offer is prayer.  And I AM praying.   When I can't sleep, I try to just lie there pray so that at least I can feel that the time isn't wasted---hate the waste of time this thing does.   Love you. xoxo

[Wildflower0214]

Luv, I know you have had such a hard time for a while with this. It really is difficult to deal with. I hope it is short lived and I hope you get better. I'm getting to the point I really have no words. I don't what to say. The only thing that I known to say is I'm sorry, and I know that doesn't do anything to help you.

 

I've had people tell me they are sorry so often... And I appreciate the sentiment, but sometimes it makes me just want to go crawl in a hole, because they can't do anything to help me, no one can. I'm sure Im not the only one who has felt like this.

[Wildflower0214]

Selma, thank you. I pray during the night too and often end up in tears pleading for some relief.

 

Thank you for caring and for praying. The getting through this is nearly unbearable. But there has to be a way through this.

[luv2knit]

We will get through this... I'm not sure how--but we will!! Our prayers will see us through.

[Wildflower0214]

Thanks Luv. I know, we have to survive.

 

One thing I would like to make note of. I have not been able to remember my weekly therapy appointment in over a year because of cognitive issues. Since I have had issues with the sun, I have to do therapy over the phone, so it doesn't much matter if I remember because he just calls me.

 

But, for the first time in a long while, the night before my appointment, I was brushing my teeth and I actually remembered that I had an appointment the next day and I remembered it was at 3pm as well. This appt had been scheduled a week prior and I had not even written down a note to myself to prompt the thought throughout the week.

 

So, I would say, maybe a switch has been flipped back on. Maybe a small one, but something has obviously changed.

[SelmaLady]

Hooray!!  Every little positive gives reality to our hope!  xoxoxo

[Wildflower0214]

Hooray!! Every little positive gives reality to our hope! xoxoxo

Yay!!!! Xoxoxox Every step counts!

[AliG]

 Don't crawl in to a hole, Wild. It's not true that we can't help. What do you think we're doing here, if not helping each other.  We're giving support, and even though it's virtual/ cyber support, it's worth more because we understand each other so well, and what we're going through, because we've experienced it "first hand". No body on the planet, understands us , like we do . Hang in there, my friend & I hope the switch  has been flicked back on , for a  long while.  Hugs,   Ali.

[Frustrated]

Wow I sure hope and pray that this means your mind is clearing to some degree.  YAY!  Boo that you still have so many other issues still.

[direstraits]

so glad you've had a small glimmer of hope;something we all need-may it continue XO