For those with heavy neuro symptoms/anxiety - how do you tolerate meds

[Pyr2]

Hi the title pretty much says it all. For the past two years I have been in a total state of being ramped up and nerve hyper excitability. I feel very much in the minority bc most people on the board seem to have a fatigued state.

Ive posted before so sorry if this is all repeat, but mine started with 2 years ago with out of the blue adrenaline rushes in my sleep and very high adrenal feelings and symptoms almost like something was attacking all my nervous system . They tested me for some adrenal tumor and other things. When the anxiety became overwhelming from all the twitchings and head pressures and assorted goodies, I turned to a psychiatrist for help. However EVERYTHING he gave me made it all worse. I recovered for a short while (when I was told I had reactivated EBV and Lyme I then had a focus and felt less scared). But now a year later I am really questioning the validity of ALL DIAGNOSES and keep coming back to there must be something wrong with my brain and that I am brain damaged or something has infected my CNS. I am on Valcyte and feel positively poisioned. Eyes burning and twitching, sunburned face feeling, acute anxiety back, insomnia. Anything that has hydrochloride tends to make me worse. But even Klonopin and Valium didn't work. Im worried that NOTHING will take this edginess off. I feel so different than everyone which makes me wonder if docs are missing something! I do have autoimmune markers for ANA, histone and Anticardiolipin, but no rheumy will make the call that I have an actual disease. I had a spell of this for 6 months back in 1999 and then lived perfectly fine until 2013. I know autoimmune can flare and remit. At the time of that flare, I had super low c4 and a high Igm. The Igm is still in my blood today but no one can figure it out.

Sorry, I just needed to vent. This is getting so hard. I am pacing and crying all day long. Maybe its lack of oxygen to my brain?

 

[Eeyore]

I don't think anything that has hydrochloride can make you worse, as water is a hydrochloride - so is sugar, alcohol, starch... any carbohydrate. It's just hydrogen and oxygen, which is ubiquitous in organic chem.

I think they are missing something with you. Your condition strikes me as neurological in nature rather than infectious, although it may be genetic too. If it is infectious, then there is likely some genetic reason you are not fighting infection normally. You should ask for proof you are actually experiencing a reactivated infection of some sort - antibody titers are never proof of reactivation, only of prior exposure. PCR or culture is proof of active infection (mostly).

You need to find out if the IgM is monoclonal or not (IFE or SPEP). You could have a monoclonal gammopathy. These can often cause neurological symptoms. You could also have a hyper IgM syndrome, but this doesn't seem to fit as well. I would look at ganglioside antibodies as well.

Symptomatically, you might get some relief from NMDA antagonists - e.g. lyrica, benzos, etc. These can help with anxiety in sufficiently high doses, as well as helping with nervous hyperexcitability. They all require a prescription. You should talk to your doc about it. Hydroxyzine might also be an option - this is a non-habit forming anxiolytic and antihistamine and is somewhat sedating. Also something you could mention to a doctor.

If eyes are bothering you, ask the opthalmologist for a schirmer test to see if they are objectively dry. It's a 5 min in office procedure that is painless and nearly free.

You don't have a firm diagnosis yet - you need to push your docs to establish something more firm. None of the hand-waving crap they like to give when they are confused. If they can't/won't do it ask for a referral to someone who can/will.

Valcyte is not a benign drug either - it's quite dangerous and has many side effects. It may be causing some of your problems. If you do have active EBV, which is rare (but possible), then it may be necessary, although there are other choices too. High dose valtrex works rather well on ebv (but not on cmv). It's probably safer, although in very high doses you have to monitor kidney function.

 

[eafw]

I don't think anything that has hydrochloride can make you worse, as water is a hydrochloride - so is sugar, alcohol, starch... any carbohydrate. It's just hydrogen and oxygen, which is ubiquitous in organic chem.

No, hydrochloride is hydrogen and chlorine. Water is not this, nor anything else that you list (they have hydrogen and oxygen in them, not chlorine)

I am on Valcyte and feel positively poisioned. Eyes burning and twitching, sunburned face feeling, acute anxiety back, insomnia.

Perhaps ask your Doctor about lowering the dose of this ? Also ask about alternative sedatives to tranquilisers as a temporary measure.

Sorry, I just needed to vent. This is getting so hard. I am pacing and crying all day long. Maybe its lack of oxygen to my brain?

If you can lie down and breathe slowly does it help ? Or if you have physical energy, some stretches and weights ?

 

[Eeyore]

@eafw - Yes - of course you are correct! Sorry, brain fog or something - was picturing -OH in my head. It is hydrogen and chlorine. The point remains though that it's ubiquitous in the human body. Salt water contains lots of it. Human blood contains it. Water has lots of hydrogen ions, so if you mix in a salt containing chlorine, you also have chlorine ions. So it's not really possible to have a bad reaction to anything containing hydrochloride. It is necessary for human life.

Neurologically it sounds more like muscle pain induced from overexcitation of nerves. This may be due to reduced threshold potential, which is why you'd want to raise that threshold pharmacologically, either by inhibiting NMDA or via GABA agonists, etc.

 

[Pyr2]

Thanks. I was able to go out for a nice long walk. That's the thing - I can do things like that. No real fatigue. Thats why nothing makes sense to me. Although I will get some PEM later.... so maybe it fits a little.

I think thats whats getting to me. I have had the million dollar workup and no answers. Yes, SPEP and IFE blood and urine. Had them for 16 yrs running - no monoclonal detected. Just last month in fact. I do have a slightly elevated ratio kappa/lambda (2.06) but hem/onc doesn't seem too concerned b/c my actual kappa lamdas are still in range. And IgM is only mildly elevated (300). Not the 1500+ numbers you see with hypervisocity.

I do NOT have EBV by PCR. That was the hem/onc who did the tests commented, like why are you on this? He said he only puts his sickest patients on Valcyte. I just have EBV and CMV showing as reactivated.

Going to ID dr on Thursday and neuro on Monday. At what point do you keep repeating and repeating things. I just don't know. Ive had three brain MRIs and a lumbar puncture. Hopefully, something, these cranial neuralgia issues are killing me. Cranial neuralgias are generally three things - autoimmune, infectious or malignant based.

 

[Eeyore]

Ok - well it's good that you don't have a monoclonal pattern on the IFE/SPEP/UPEP. That was my biggest concern with you. You need to regularly monitor that though because you do have a plasma cell dyscrasia - albeit not one that I know to be particularly risky in terms of progression to malignancy.

Reactivation cannot be demonstrated by antibody titers. Any doc who tells you that he/she can prove reactivation with a negative PCR and negative culture (in the case of bacteria) should be approached with skepticism and second opinions from other physicians should be sought. Antibodies - including IgM - prove neither new nor reactivated infection. There is a weak correlation between elevated IgM and new infection, and weaker still for reactivation.

I wonder if you have some sort of a non-secretory dyscrasia? Is your sed rate elevated? Do you know what it is?

I still think it would be worth looking for anti-mag antibodies and anti-ganglioside antibodies.

I tend to think your heme/onc is right - I just don't see why you are on the valcyte. I would talk to an infectious disease specialist about this and see if they agree it makes sense (or doesn't). Valcyte is a pretty serious drug, and can cause cancer, and considering your existing dyscrasia - I'd be very hesitant to use it. At the same time, if there truly is active EBV, it can increase the risk of hematological malignancy. I just haven't seen any evidence yet that you have it, and I think the PCR test argues against it (and your heme/onc seems to think so as well). Maybe the doc who put you on valcyte really does have evidence of reactivation - I just haven't seen anything from you suggesting that might be the case, and it's not a risk-free drug by any means.

I think you will get the most benefit from a neurologist. They should be able to help with symptoms at the very least but also possibly with diagnosis. I don't think the valcyte has seemed to help you (correct me if I'm wrong) - which it should if EBV were the cause of your problems. I would be looking at autoimmunity or some type of genetic disease, of which there are many.

Do you have peripheral nervous system symptoms, like pain in extremities (especially feet/hands), alterations in sweating, palpitations, dizziness/vertigo on changing position, loss of sensation (especially in hands/feet), fasciculations/twitching (if so, where? when? how often?), loss of hair anywhere on your body, weakness, visual disturbance, etc.?

Did any MRI or spinal tap show any abnormality, and if so, what specifically?

Is there a family history of anything like this?

What kind of occupational / environmental exposures do you have?

 

[ahmo]

Here's a vid re B12 deficiency. It can present in many neurological issues. Hope you find some answers soon.

Diagnosing and Treating Vitamin B12 Deficiency‬
http://www.youtube.com/watch?feature=player_detailpage&v=QqjyAeOLyKM

http://www.b12deficiency.info/
This site was created as a hub to bring all the key websites on vitamin B12 deficiency together in one place.

 

[5150]

Re B12 deficiency: I had this problem & it was compounded by a Vit D deficiency at the same time. It made so sick, nearly killed me. But no doctor told me about it. I researched and saved my own life. My appetite was completely gone; lost almost 30 pounds in a month, before the high-quality supplements kicked in.

Just mentioning this, as the B12 post above got my attention. The D deficiency simultaneously, makes it a bigger problem.

 

[Pyr2]

Thanks so much 5150. I tried B12 sublingual but wasnt consistent I need to get back on track!.

Eeyore - I dont want to be alarmist, but I am thinking I have one of those enchephalitis or paraneoplastic syndromes that have a lot of autonomic/dysautonomia features.

It started acutely with cranial neuralgias and eye pulling sensations and twitching. Then I would wake up on the middle of the night with adrenaline rushes where my heart would gallop. That progressed to autonomic seizure like episodes where i would feel immense head pressure, my face would stiffen, i would get nauseous, have to relieve myself. I was hospitalized once during this and they were able to capture heart rate and blood pressure rise and a prolactin surge after ( 3 x the regular limit). However, they released me with diagnosis of migraines. At the same time this was superimposed by massive amounts of snappiness and agitation and high anxiety. It was as if my system was producing a lot of adrenaline.

This gave way to heart issues. INstead of getting faster, now lots slower. Long QT. My cardiologist said she never saw me in such a state. Then yes, all over body twitching and neuropathic type pains. However, EMGS were negative so not sure how that plays into some of the AntiMag, etc.

Things died down for a month. Then, after a hep B vaccine, all of these symptoms once again appeared with a vengeance as well as a positive Histone AB and a rash.

Now I have a central sleep apnea issue going on and I get this burning in my eyes and my head. When it gets bad, my face feels sunburn and my brows droop and eyes twitch. And dizziness and numbness in my sleep.

horrible ADHD like anxiety - its like something busted in me two years ago all at once. So scared b/c its involving all the nervous systems.

 

[digital dog]

It could be akathisia perhaps. Did you take anything preceding this flare? Any supplements, fish oils, drugs etc? Had you previously been on any drugs (antibiotics, anti nausea, antidepressants etc)? I read you had an injection; this could have started the akathisia.

Im sorry you feel so bad. It sounds torturous. Good news is that is does go if you stay off all drugs and supplements.

I live it too and feel my brain is damaged. Mine is due to prescription drugs that I naively took for CFS and IBS. I cannot tolerate anything really as I get so anxious.

Sorry if what Ive written makes no sense to you. Perhaps it is not relevant to you at all. I hope it isn't.

DD

 

[Pyr2]

Well ,yes, this time its the Valcyte. I think I am stopping it for now until I understand what's going on. Or maybe its a good sign as per Lerner? I dont know anymore!

 

[Eeyore]

I do not think your symptoms are a positive sign of anything. There is no reason I know of to believe this would be true.

There are panels you can get for dysautonomia that look for antibodies. Quest offers one, and Mayo offers an even more comprehensive one. This might be worth doing in your case. It looks for the paraneoplastic antibodies as well as antibodies to ACh receptors and some other things too.

Long QT is often medication induced - it should be checked when off meds to see if it's congenital (or at least not iatrogenic).

I've had twitching as well over the years, especially my eyelids.

EMG's don't detect small fiber neuropathies. You'd need a skin biopsy for that. Probably worth doing in you too - it's pretty trivial (3mm punch biopsy, like a derm does in office with lidocaine). They look for nerve fiber density.

I think a good neurologist is likely to be the most useful for you. I think an ID doc can rule out infectious causes and help you know if you can come off valcyte. It doesn't seem to be helping you at all...