[SpaceBird83]

Hi guys, first post. Happy to be here.


In need of some help at the moment. I am having a variety of symptoms that I need some guidance on. The doctors aren't helping me much and insist a lot of these things are caused by bipolar. Please bear with me if you don't mind.

I have been diagnosed with BP II and depression since I was a teenager. Also ADD but I don't consider that a real diagnosis, just spacey. Depression, then bipolar II as I grew older. I have taken dozens of different medications. Benzos, adderall, mood stabilizers, anti-depressants, APs, etc. In 2012, I started on zyprexa. Had been on some other stuff, mainly risperidone a year before that. Also take gabapentin atm.

At first, I started on zyprexa and thought I had found the solution to my conundrum of many years. I thought it was a miracle drug. About a year ago, I kind of woke up one day and realized it was failing to manage my symptoms, and having side effects and cognitive decline. I had a numb spot in the back of my head while I was on it. That spot is no longer numb but in overdrive.

Long story short, I switched to seroquel in January. I had been tapering the zyprexa prior to that. I recently have been able to get off of that and I now just take 900 mg of gabapentin at night. I had a somewhat atypical reaction coming off of it. No one seems to believe me but I am still having serious issues. I am concerned for my health and I don't know what to do.

I have had hundreds of symptoms. Yeah, the typical stuff. Psychosis, mood swings, severe mania, bone crushing depression. I hated to be alive for months but honestly I expected some of that stuff.

I now have numbness, tingling, throughout my body, I seem to be permanently manic in the always awake sense not the euphoric sense, I'm constantly hot. I sweat a lot. Weird chest pains. I worry about my heart and organs. I have diarrhea probably 10 times a day. I have a weird, pulsing pain on either side of my stomach that is pretty constant sometimes bad sometimes mild. I vomit almost every day. Sometimes a dozen times. Nausea. I feel like I have some type of nerve damage. I feel like I am crawling in my skin all the time. It has been a nightmare to live inside of my body for over a year now. These things have been persisting almost the whole time.

I don't have insurance and want to get all of this stuff checked out but most people just consider it a return of my symptoms and freak out when I tell them I am getting off of my medication. I consider most of them highly toxic. My mind, my body, my life, my decision. Honestly my bipolar isn't any worse now but I never had full blown mania to begin with. Most of my bipolar signs were considered 'soft signs'. It was mostly depression and largely situational IMO. Life has been hard for me.

Since going through whatever has happened to me from stopping zyprexa (it has been about a year that I have been having serious symptoms) I have picked up drinking pretty heavy (about 6-8 drinks a day sometimes less). It was the only way I got any relief from the withdrawal. Not smart, I know, but I was on the edge for a while. Still am in some ways. Trying to quit, harder than I realized.

I don't know what to do. I don't have insurance, the doctors don't seem to listen. They insist that zyprexa withdrawal doesn't even exist beyond a couple weeks. Yeah right. I've even had them give me a bipolar diagnosis from a walk in clinic that talked to me for five minutes when I was complaining about neurological problems not related to a mood disorder. They don't know where to start. All the tests and everything would cost a fortune. I am willing to get help and I will get insurance when Obama lets me in November but won't be in effect until January. I just need to get moving in the right direction and need some guidance.

I am really concerned about my health. Thanks for listening. Sorry for the novel.

[SpaceBird83]

Sorry for the double post...but I have also developed something similar to tourettes. I yell obscenities pretty frequently and uncontrollably. My nervous system seems to have been destabilized and over-sensitive to pretty much everything. The sensitivity has subsided but still there. I thought it might be worth noting. My personality has changed dramatically since stopping the drugs. Different parts of it came back over time.

A couple links on the tourettes like symptoms.

Won't let me post links. They are on pubmed.

I am going to get some blood work done and to see my doc soon but think I need to pursue alternative treatment. It seems pretty pointless and I don't think that they can help me.

Planning to start magnesium, b12 (possible injections from web), b complex, and fish oil. Not sure about anything else.

Sorry for the long posts, but have a lot going on.

[mrsD]

All that vomiting... sweating.... could be fever or appendicitis.

Also all that vomiting could be pancreatitis.

You really need to see a doctor. And you need to stop drinking alcohol.

Take care.

[caroline2]

I'm certainly not an expert but do know about the B12 issue. I've been working with alternatives for my own health for over 25 yrs and have had my share and others share of side effects and damage from so many drugs. I'm a huge believer that so much of our issues can be worked with or managed alternatively.

For me, I have gotten a "cure" for allergy/sinus issues I had for a lifetime prior to 1995 when I found pycnogenol and then grape seed ex which are OPC's and address SO MANY health issues.

Integrative MD's work firstly with supps/vits/minerals etc and if and when needed will go to the pharma drugs.

I see you don't have insurance...I use Google for health issues I want to work on. I don't run to the doctors.

[Chemar]

Hi SpaceBird83

Here in Florida there are County and State health clinics that charge on an income scale so perhaps look into those where you are, if needed.

I am a firm adherent to more natural ways to treat most things, but I also realize that there are times when one does need the skill and learning of a qualified physician, whether Integrative or Conventional.

Just also wanted to mention that many years ago my son was initially on meds for severe Tourette with intense co-morbid conditions and he had horrible reactions to all of them, with zyprexa being the most horrendous, and with a very lengthy and difficult withdrawal.
So I sympathize greatly with what you feel about that drug!
We were most thankful for an excellent Integrative doctor who helped him through all that and got him onto more natural treatments that were life changing improvements!

This may have no relevance to you, but just some of what you have written also made me think of symptoms of PANS, which is mostly diagnosed in childhood but more and more adults are realizing they can trace some neurological and mental health, among others, issues back to it. It used to be believed only related to Strep infections in susceptible children (and then called PANDAS) but now more and more infections, including Lyme Disease, are being added to potential causes. It can exist along with other conditions, so whether or not your BiPolar dx etc is accurate, still worth maybe checking out? Just a thought and again, may not be relevant to your situation.

Anyway, I do hope you are able to get some clear answers and effective treatments.

[caroline2]

I should say, don't run to doctors unless it's something I just can't resolve myself. Not long ago I had an infection on my leg from scratching it or who knows and rather than try to treat it and hope I can do it, I went to an Urgent Care and got an abx for skin infection.

Next month I go to my annual check with my integrative doctor and get labs and see where everything I'm working on is now with all the supps I take for them...like homocysteine and Vit D and some other issues. I'm much older than you so I've been at this for a long time.

[Lara]

I'm sorry for what you've been going through for far too long.

Just thinking...

How long ago exactly did you stop the Seroquel?

Did the phonic tics start while you were on that or after you stopped. Never had any tics before?

You said "I had a somewhat atypical reaction coming off of it."

Do you mean it was really difficult but the docs said it would be easy??

If anyone ever tells you it's always a breeze then they are wrong. My son was on Risperidone when he was young for different reasons from you and it was sooooo difficult to get off. The problem was that it wasn't helping either. It had hit the well known neuroleptic Wall. Bang. Stopped working. Then it was so difficult getting him off it that I ended up having to shave the tablets and do it ultra slowly. The doctors had just said it would take a couple of weeks to decrease. Wrong. It took months.

Thinking of you. You have a lot on your plate.

[February]

Hi spacebird. I am sorry doctors are not taking your neurological symptoms seriously. Stomach problems, sweating, chest pains and numbness should be checked out to rule out autonomic neuropathy. If you are still having chest pains go to the emergency room to get it checked out. They have to do an ekg at the very least. They are not fortune tellers. An easy way to find healthcare until your plan kicks in is to google your (zip code + free clinic).

If you are having reactions to meds, self medicating with alcohol can be just as bad because it may be metabolized with the same enzyme.

There is a genetic metabolic disease called AIP porphyria where an enzyme is only partially functioning. If the load (medications, hormones (starting at puberty) alcohol), is too heavy for the enzyme’s ability to process, a toxic neuropathy, including neurovisceral can happen,

This is not meant as a diagnoses but as an example of how our bodies may or may not be able to metabolize medications, hormones, alcohol. This is only 1 of more than 7000 genetic diseases and even more are undiscovered.

This link is new diagnostic testing that can determine how the enzymes are functioning.

http://www.iversongenetics.com/dme-genotype.html

I hope you find some relief very soon.

Take care.

[SpaceBird83]

Originally Posted by Lara

I'm sorry for what you've been going through for far too long.

Just thinking...

How long ago exactly did you stop the Seroquel?

Did the phonic tics start while you were on that or after you stopped. Never had any tics before?

You said "I had a somewhat atypical reaction coming off of it."

Do you mean it was really difficult but the docs said it would be easy??

If anyone ever tells you it's always a breeze then they are wrong. My son was on Risperidone when he was young for different reasons from you and it was sooooo difficult to get off. The problem was that it wasn't helping either. It had hit the well known neuroleptic Wall. Bang. Stopped working. Then it was so difficult getting him off it that I ended up having to shave the tablets and do it ultra slowly. The doctors had just said it would take a couple of weeks to decrease. Wrong. It took months.

Thinking of you. You have a lot on your plate.

I stopped the seroquel about a month ago I think. Been a few weeks at least.

I had a couple tics when I was on it but it was so rare that it didn't bother me. Before that, I had never had a tic. The tics started full force when I switched to seroquel. They seem to flare up when I am feeling bad. I think they are anxiety or TD related. I also get weird jerking movements and sometimes my body jolts instead of a tic.

I knew it wasn't going to be easy coming off of it but never like this. Even all the horror stories I read, mine sounds up there with the worst of them. I don't hear of the neurological issues too often and most people have made significant improvements after this long. I never would have thought I would be sick for over a year and I didn't know about protracted withdrawal back then. People get react very differently. Some don't even get that much of a withdrawal. A lot of people report anhedonia, but I wish I had that compared to the extreme emotions I deal with. If I wasn't bipolar before, I most certainly am now.

[SpaceBird83]

Originally Posted by February

Hi spacebird. I am sorry doctors are not taking your neurological symptoms seriously. Stomach problems, sweating, chest pains and numbness should be checked out to rule out autonomic neuropathy. If you are still having chest pains go to the emergency room to get it checked out. They have to do an ekg at the very least. They are not fortune tellers. An easy way to find healthcare until your plan kicks in is to google your (zip code + free clinic).

If you are having reactions to meds, self medicating with alcohol can be just as bad because it may be metabolized with the same enzyme.

There is a genetic metabolic disease called AIP porphyria where an enzyme is only partially functioning. If the load (medications, hormones (starting at puberty) alcohol), is too heavy for the enzyme’s ability to process, a toxic neuropathy, including neurovisceral can happen,

This is not meant as a diagnoses but as an example of how our bodies may or may not be able to metabolize medications, hormones, alcohol. This is only 1 of more than 7000 genetic diseases and even more are undiscovered.

This link is new diagnostic testing that can determine how the enzymes are functioning.



I hope you find some relief very soon.

Take care.

Sorry for not using the multi-quote but haven't figured it out yet. Not feeling well today.

Very informative Februrary. Thanks.

Yeah, I am reducing my alcohol and just going to stop. It makes me feel worse. I am trying to phase it out.

Do you think it's possible that I damaged my enzymes by drinking while taking the 100 mg of seroquel? I don't know which enzyme it is, but I assume it's the same one.

I started 10 mg of sublingual methylcobalmin and I think it might be helping.

These symptoms have been happeing for so long that I really doubt that it is pancreatitis or appendicitis. My appendix would have burst by now. I have had the stomach pain for about a year now.



I appreciate everyone that took the time to respond. Thank you.