Topic: What to do when Anxiety meds don't work ? I've treid everything !!
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
This was my very first symptom in this disease almost 3 years ago.
I worked 14 years as an RN in ICU's, Er's, Trauma, etc. and never had a problem.
Then I was struck with free floating anxiety. I've been to at least 10 Psychiatrists and I do think this is part of Lyme and PKU, but it just keeps getting worse.
I'm not sure if this is causing my breathing problems, but I get out of breath just laying down and now burning in the chest which could be an ulcer or just part of the anxiety. Regardless, it's hitting me all day long from the minute I open my eyes.
I take Klonopin 1mg 2 x day and as needed Xanax, but it doesn't seem to do anything anymore. Sometimes a 50mg dose of Benadryl will take it down a little.
I have tried many mood stabilizers, low dose Antipsychotics, Neuroleptics, and I can't tolerate even pediatric doses of SSRI's. I've tried OTC supplements as well all to no avail.
This is the debilitating type of anxiety, the kind that many would just rather jump off a bridge. I will be seeing a toxicologist who treats PKU and hope this will give me some relief, but the appt. isn't until mid January.
Now I'm getting tension headaches all day long as well which may or may not be related.
Oh, and lastly, I've done all the audio tapes and workbooks, but this appears to be organic in nature and not the type where I'm worrying about anything. I don't get sweaty palms or high heart rates with this, but I do get restless legs bad.
I can make myself so sedated and still have it going on.
Any thoughts ?
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
I am sorry your going through this Gary. I am in the same boat right now.
Severe anxiety and severe headaches. My Cymbatla is not working and xanax is barely touching it.
If you read under my last post about anxiety Metallic Blue had some really good recommendations for me.
I would type it for you but I need to lay down. My head is about to explode off of my shoulders.
I spent the whole day in the ER trying to relieve the pain. After Dialudid, Demerol, valium, something else that made me really anxious, anti-inflammatory...I left with the same headache.
It just seems to be never ending.
My anxiety appears to be as high as yours. My husband found me in the bathroom last night curled up and crying and shaking. I too feel like I could jump off a bridge.
posted
I had random panic attacks every couple weeks that lasted several hours before I started treatment. I thought they were bad since since they sent my body into SVTs at 200 bpm and blood pressure in stroke range (200/160).
Well, I had these symptoms even worse and more frequent after starting treatment, but also developed the severe anxiety that you are talking about. It's not anxiety that changes my heart rate and blood pressure, but since it was constant 24x7, it is truly more distressing then all the previous panic attacks I have experienced. Some nights I would pray that I would die, and some would confuse this with being suicidal. The thing is, you don't want to die; and in fact, you are afraid to die. However, this sensation feels so much more powerful than you. It's that your afraid to live in that overwhelming state; it's scary. When you are in that state, I find myself wondering if it will ever go away.
Unlike the typical person with anxiety, I have "lost control" before and some days have gaps in my memory. Some days I don't remember how I got places or what I did, but I can usually rememeber most things if someone reminds me (isn't that strange).
I have stopped antibiotics because of these symptoms, and I am doing better day to day. I think it maybe had to do with neurotoxicity and encephalitis since my CTs were normal while I was at my worst. The Klonopin/Ativan combo didn't do much when I was at my worst, but 4 mg of Ativan was enough to make me go to sleep (do not take this much!!!). I only take the benzos as prescribed, but I had a couple desperate nights where I couldn't get a hold of any doctors and ERs couldn't do anything, so I felt the only option at the time was further sedation. I was prescribed anti-psychotics but haven't touched them because as you said, it all feels organic, and the last thing I need is to be addicted to another med. I also can't tolerate SSRIs/SNRIs since they make these symptoms much worse. I'm also off antibiotics the last few weeks, and everything is becoming tolerable. I think my symptoms are returning to baseline (or hopefully better), since every day my brain is more functional and reality becomes much clearer.
I get severe chest pressure and burning, and I don't know what it is. It seems to stick around most of the time, but it's at its worst in the anxiety states.
I would recommend seeing someone for detox (your toxicologist should know what to do I would think), and I am about to be tested for KPU myself. With KPU, your detox pathways don't work very well, and that can explain why people like us have so much trouble tolerating treatment. I've been reading a lot of about KPU (also called Mauve Factor, HPU, and many other things), and after my reading, I find it sad it's not a normal thing we test for in the United States. I've been reading scholarly material beyond Dr. K's stuff, and KPU is a serious condition, and people like you and me need to be tested for it.
Unfortunately, not to look like a conspiracy theorist, but it seems that the pharmaceutical industry tries to bury information like this that could potentially treat millions. In fact, Medicure Pharma, Inc. was working hard to get P-5-P off the market when they recognized the benefits of this coenzymated B6.
Download and read the PDF for yourself. If the pharmaceutical industry gets their way, P-5-P will be a "drug".
From their paper:
"Medicure has invested over $60 million in the development of P5P as a novel cardioprotective agent for the treatment of cardiovascular events associated with ischemia and/or ischemia reperfusion injury. The company has completed many Phase I and II clinical trials, and has recently completed enrollment in a large, Phase III trial. Medicure's product, MC-1, has Fast Track designation from FDA, reflecting the drug's potential to address unmet medical needs in the treatment of a life-threatening disease. The continued marketing of P5P-containing dietary supplements may detrimentally affect the market for the drug product under development. Moreover, the mere potential for this to occur could undermine the company's market value, its capacity to raise capital, and therefore its ability to continue with its development plans. It is particularly egregious that this is being done by dietary supplements that are adulterated. To protect the incentive for Medicure, and other companies, to develop innovative drugs for the treatment of life-threatening diseases, and to further the policy goals of DSHEA's exclusionary clause, FDA should issue a regulation prohibiting the marketing of P5P as a dietary ingredient."
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
KPU helps a lot of us who have anxiety. Hopefully it will be your answer. It's a relatively easy fix since you just take a few supps, though adjusting to the supps isn't easy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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