25 replies to this topic

[Hel]

So I have Postural Orthostatic Tachycardia Syndrome. It's a autonomic neurological disorder that very few doctors know about. After years of being left untreated since my initial diagnosis because the only doctors who specialized in it near me moved away, I finally have been able to schedule an appoitment with them that I have to travel half way across the country for. Unfortunately, I have to travel across the country twice, since before they will see me they want me retested for POTS, since I was diagnosed over ten years ago as a child. The test is in mid-October.

 

Before the test I have to withdraw from half the medications I'm on, so the medications won't interfere with the test. Supposedly. I'm not sure what they're going to do about the withdrawal interfering with the tests, but I guess that never occured to them.

 

One of the medications I have to withdraw from is Cymbalta. I've been trying to withdraw from it for over a year. I was originally on 90 milligrams and as of this summer, was down to 45. After horrible initial withdrawal symptoms when I went too fast last summer, like wanting to slice off my eyelids (amongst other physical complaints), I decided to take my time. But now I don't have time. I am going down 5 milligrams every three days. I can't breathe and feel like I'm choking when I'm lying down. I'm trembling all the time. I always had headaches because of my POTS, but now they're worse. I feel agitated and weird. It's hard to tell what's a POTS symptom and what's from the Cymbalta.

 

I also have to withdraw from Trazadone, Topomax, Fludrocortisone and Zofran before the test in mid-October. The reason I haven't started earlier is because I just scheduled it and didn't know I wouldn't be allowed to take any of these while being tested. I cannot reschedule because it can take up to a year to get an appoitment. I haven't started withdrawing from anything else yet because I'm honestly afraid, with my pre-existing condition, that it will kill me. What should I do? Is there a way to make this easier? Are the doctors trying to kill me?

[ZappAlta]

I dont have any answers related to all of your meds but I do suggest you inform your primary care Dr so that he may consult with the speciaists requiring this test.Please do not discontinue this amount of medication without medical supervision.  

[fishinghat]

Welcome Hel

 

So sorry you are in such a bad situation. Cymbalta withdrawal can be a real hell as can some of the other meds you need to quit. The standard recommendation on this site is bead counting. You open one of your tablets, count the beads (usually around 300) and reduce by 3 beads a day. A little over 3 months to come off it. The symptoms while doing this can still be overwhelming. I know that trazadone and Zofran have significant withdrawals as well. For your dr to recommend you withdraw from all of these within 1 year is not a reasonable expectation. You definitely need to get your gp and pdoc involved. There are other meds to help with the withdrawal but unluckily most have withdrawal of their own (eg benzos like lorazepam). There is however clonidine and hydroxyzine that can be used with little to no withdrawal. THESE MEDS MAY BE A CONCERN FOR YOUR POTS THOUGH SO PLEASE BE CAREFUL AND CHECK WITH YOUR DR. Believe it or not vitamin C has been shown to help with some of these withdrawals (most research recommends around 1000 mg/day). If you try this be sure and get it in the capsule form that will dissolve in the intestines not in the stomach. It can cause severe heartburn otherwise. The vitamin C is not a cure for the withdrawal it just takes the edge of some. There are treatments for some of your other withdrawals you will have to go through. I am not at home today so you will need to give me a few days to do some research. I will post what I find here on this string as I dig it up.

 

Be patient with me and hang in there.

 

God bless

[fishinghat]

Mid-October? I missed that comment. No way!!  That is a ridiculous suggestion. The only way to do that would be to go to a rehab unit in a hospital and admit yourself. That would truly be a hell of an experience. Even so you must realize that there would still be traces of these drugs in your blood system. Many of these are fat soluble and excess is stored in the fat deposits in your body and liver. Those concentrations take time to flush out.

 

I will start on your research and post as soon as I can but this needs to be rethought by your drs.

[fishinghat]

Medical Info on the use of Vit C to help with withdrawals (below).
 
Also many use Omega 3 (3000 to 6000 mg/day) to help rid their body of fat stored medicines as well as help reduce withdrawal effects. Subjective not objective.

Withdrawal

https://www.ncbi.nlm...pubmed/25250292
Helps with morphine withdrawal symptoms.
https://www.ncbi.nlm...pubmed/10836211
High dose (300 mg/Kg body weight) Vitamin C greatly reduced the symptoms of heroin withdrawal. (40 patients, 4 weeks)
https://www.ncbi.nlm.../pubmed/1542433
Reduces morphine withdrawal symptoms.
https://www.ncbi.nlm.../pubmed/5480681
Vit C helps with tranquilizer withdrawal.
http://www.researchg...-dose_vitamin_C
High dose Vit C helps with heroin withdrawal.
https://riordanclini...ical-rationale/
500 mg/day helps with benzodiazepine withdrawal.
http://www.whale.to/a/stone_h.html
2,400 to 4,200 mg Vit C for many types of withdrawal.

[brzghoff]

hel - i don't know anything about POTS, other than what i've read on wikipedia (for what that is worth) but i can say that fishinghat knows his stuff and i echo his advice that you must get ALL your doctors involved. it is also not unusual for physicians to be unaware of the reality of how severe withdrawal can be from any of these drugs. it is very important for them to know exactly how you feel. you made a very good point that it will be difficult to know what symptoms are from POTS and what are from withdrawal since many are shared. i wish you all the best. 

 

fishinghat - you are unbelievable. your compassion and selflessness to do the research you've presented here is truly remarkable. you are an amazing person.

 

i think i can speak for all - THANK YOU!

[Hel]

Thank you all of you.

 

I realize that this definitely is ridiculous and I am upset and confused. I am going to call my POTS doctor this afternoon, though I will probably only end up talking to the secretary, because that's how things seem to work. I plan on asking them to give me specific instructions on how to go off each medication and also asking how they will know whether the test is measuring symptoms of POTS or symptoms of withdrawal. I guess I will also ask if it is realistic for all of this to happen by mid-October, but I'm worried if I bring that up they'll stop trying to rush me in and I'll have to wait at least a year to see the specialist, and I just can't because of my illness. I was already forced to take this semester off college.

 

I can't talk to my gp about this because she doesn't believe in POTS and thinks I have IBS. She wants me to see a psychiatrist at the wellness center, but going down that road is how I ended up on cymbalta in the first place, among other damaging medications, and I'm not eager to repeat that experience. 

 

Thanks for the research, fishinghat. I already take a multivitamin but it includes just a tiny dose of vitamin C in comparison to what those articles recommend, and no omega 3.

 

Anyway, I'll keep you updated on what the doctor/secretary says, I guess. I realize the check yourself into a hospital comment was probably facetious, but I really don't want to do that. I've had very bad experiences with hospitals.

[fishinghat]

Hel, the comment on the hospital was not facetious. That is what detox centers are for BUT the horror stories to go with it ....well lets just say I wouldn't do it.  lol

[fishinghat]

Thanks Brz

 

I have to assume you are very familiar with POTS (I have a similar condition called Perioxymal Atrial Tachycardia). If you already know this please forgive me.

 

POTS is a condition not a disease. This means it is a set of symptoms that frequently occur together and can be caused by several pathological conditions. The most frequent of these for POTS is low blood volume. This can be linked to low salt intake, dehydration, low minerals in the blood such as magnesium and calcium (I presume the drs have checked this). And there are a number of other conditions as well. It is often linked to high adrenaline levels which is treated with beta blockers like propanonol, atenolol or clonidine. The reason I mention these is that they are not only used to treat POTS but also to help with anxiety during withdrawal.

[Hel]

I do have low blood volume, but it is my understanding that the exact cause of my POTS is unclear, as it is not linked to any actual disease. (Though that doesn't mean that a disease doesn't exist.) When I say that my gp doesn't believe in POTS, I mean she believes that my gastro issues due to slow gastric emptying prove I don't have POTS, since POTS doesn't include gastroenterological issues in its list of symptoms. Though it seems clear to me that I have both POTS and dysautonomia, and that they can and often do exist together, even if the exact cause is unknown. The fludrocortisone is meant to do what beta blockers would do for other people. It's a good idea to use beta blockers for withdrawal symptoms in theory, but then they would affect my POTS testing and I'd be back to square one. 

 

I have severely low mitochondria, so it might be mitochondrial disease, but that was something that was once again never followed up on. Anyway, there's no point speculating. This is why I need to see the specialist. 

[fishinghat]

I agree with your comments on the beta-blockers or other drugs that affect bp. Not a good idea until the test is over.

 

I have included an exhaustive review of recent medical articles on POTS. With thousands of new medical articles issued each month it is nearly impossible for drs to keep up with current information.Knowledge is power and control. Many of the articles I have attached will be unknown to your dr. You must be prepared. I suggest you scan over my notes on these articles and you can click on the links for further details.

 

A special note. One thing I noted was a frequent mention on the development of POTS after severe viral infections as well as the link to certain genetic abnormalities, especially in the autoimmune system. I find this very interesting as many of the stronger viruses we encounter can cause changes to our DNA structure. This would also explain why so many POTS patients complain of worse symptoms during and after a viral infection. If you have any questions or need clarification on any of these articles let me know.

 

 

[fishinghat]

Sorry I didn't acknowledge your compliment better Brz. I was in a hurry to get Hel this info before I had to get off the computer. I really appreciate the kind words. I have done this type of work for nearly 30 years so I figure it is something I can contribute to the site a lot easier than members trying to look it up themselves.  With my psych issues it is good for me to be able to do something to help others. It gives me a sense of worth.

 

God bless to both of you.

 

Hel more info on withdrawal from those other meds later. Sorry out of time.

[fishinghat]

Trazadone Withdrawal

http://www.ncbi.nlm..../pubmed/8056996

"Mechanisms of the development of trazodone withdrawal symptoms."

"Three cases developed withdrawal symptoms of trazodone despite gradual discontinuation of therapeutic doses of the drug. This report suggests that effects of trazodone and its metabolite m-chlorophenylpiperazine on the serotonergic system, which may result in noradrenergic rebound after discontinuation, and short half-lives of these compounds are involved in the development of these symptoms. From a clinical point of view, we suggest that trazodone should be tapered off at a very slow rate."

What do you think this type of withdrawal would do to your bp and the test? Not good.

http://www.drugsdb.c...one-withdrawal/
Good overview on thios withdrawal.

[fishinghat]

Topamax Withdrawal.

http://healthquestio...drawal-symptoms

This forum may givwe you some idea on the topamax withdrawal. I could not find any research articles on it.

http://mentalhealthd...long-they-last/
Good guidance document on topamax withdrawal. Looks accurate.

[fishinghat]

Fludrocortisone Withdrawal

I suprised me to find out it reduces salt content in the blood and can reduce blood volume. Not good for POTS, I would think.

http://www.researchg..._in_the_elderly
Notes withdrawal symptoms.

http://doublecheckmd...=12393&eid=1732
Symptoms of withdrawal include increase in BP.

http://www.drugs.com...ocortisone.html
General
Adverse reactions to corticosteroids may be produced by too rapid withdrawal or by continued use of large doses.
This same warning exists in manufacturer's literature.

[fishinghat]

I could find no scientific information to support a withdrawal for Zofran. Asan anti nausea drug there should be no withdrawal.

[fishinghat]

http://www.dinet.org...ace/pots-causes
 
This is an excellent overview on the current research on the causes of POTS.

http://www.dinet.org...pots-what-helps

A good list of treatment options.

 

Be aware there are some POTS websites out there that put out some weird stuff.

[Hel]

Thanks everyone for your help a few months ago. So I did manage to go off all five medications in two weeks on my own. I would not recommend it. My specialist discovered the underlying diseases causing my POTS, which are Ehlers-Danlos Syndrome and mitochondrial disorder. It took a lot of suffering to get those diagnoses though. But yeah, I just wanted to check back in and say thanks. And also to let people know that I no longer have withdrawal symptoms, so going off this stuff is hard, but possible. 

[fishinghat]

Congrats Hel

 

Your determination paid off.

[Hel]

This is from a long time ago, but I just wanted to post here again to warn people not to do what I did. Stopping that many medications rapidly plus a number of other medications I was put on after, some of which I experienced severe adverse reactions to and had to withdraw from as well, has left me chronically and likely permanently damaged. It's been two and a half years of complete suffering. I have medication induced akathisia, dyskinesia, liver and kidney damage, and brain damage, to name a few. Please do not do what I did and do not blindly trust or follow doctors. I wish I had never stepped foot in my specialist's office or taken any medications. I would be much better off. 

[gail]

Hello Hel,

My goodness, you have been through so much! I read from beginning to end.

And my heart breaks for you. Thank you for the update.

Do you think that some of your conditions can be helped? FH should stop in later.

[fishinghat]

Most of the conditions you mentioned may still get better like the akathisia and dyskinesia but may not go completely away. The liver and kidney damage is, unluckily, common with what you have been through and may not improve.

Is it 2 1/2 years since your last dose or since you started weaning?

Also, what type of brain damage are you talking about, if you don't mind?

[Hel]

Most of the conditions you mentioned may still get better like the akathisia and dyskinesia but may not go completely away. The liver and kidney damage is, unluckily, common with what you have been through and may not improve.

Is it 2 1/2 years since your last dose or since you started weaning?

Also, what type of brain damage are you talking about, if you don't mind?

 

Timeline:

 

- Rapidly discontinued cymbalta, trazadone, topomax, fludrocortisone, and zofran for test (October 2015)

 

- Went back on all except cymbalta and topomax after test (October 2015)

 

- Was also on nexium, birth control

 

- Specialist started me on 80 mg of nadalol, increased trazadone dosage, added cyproheptadine for migraines (summer 2016)

 

- Had severe adverse reaction to nadalol October 2016 - seizure, very low heart rate and blood pressure - went to ER, was given reglan for minor nausea through IV, had severe reaction to reglan immediately - incredibly horrific intense akathisia 

 

- Went home. Specialist told me to stop beta blocker over the course of three days. Did. Was admitted to hospital for heart rate in the 45-50 range and blood pressure at 80/50. Heart rate would increase to 120 immediately upon standing, blood pressure would drop further

 

- Hospital doctors confused. Unable to realize that 80 mg had been an overdose and led to the seizure. Unable to realize the combo of reglan, a drug with black box warning for permanent akathisia and dyskinesia, and CT of beta blocker, which is used to treat movement disorders, had horrific combination effect

 

- Doctors put me on 40 mg of propranolol and discharged me. Went home. Stopped seeing specialist

 

- Suffered incredibly. Can't describe. Could not sleep at all. Constant feeling of being struck by lightning over and over. Muscle cramping and contractions. Impossible to exist in my body. Constant urge to rip out of it. Never had experienced anything like this. PCP prescribed remeron, tizanidine, flexeril, temazepam. Took tizanidine and flexeril regularly. Tried temezepam and remeron but realized they made me worse and didn't use long term

 

- Saw new specialist in January. Started me on corlanor. Didn't take me off propranolol. Doubled my dose of fludrocortisone. Piece of shit

 

- Stopped being able to tolerate food. Reacted to everything. Unbearable suffering. Began to realize I needed to get off some meds, badly

 

- Reduced propranolol. Went off trazadone way too quickly

 

- Was diagnosed with MCAS due to constant rashes, difficulty breathing, constant reactions to all foods, etc. Started a bunch of antihistamines (at least 4 or 5)

 

- Got worse and worse. Realized doctors were killing me. Realized I needed to go off my meds. Realized the double dose of fludrocortisone was way too high for my body for multiple reasons, one of which is I developed cushing-syndrome type symptoms and had begun to lose control of my thoughts. Constant intrusive urges. Uncontrollable. Feelings and images of gory, violent things, etc

 

- Started titrating off tizanidine. Hellish

 

- Birth control I'd taken for years without issue started doing weird things to me. Bled for over four months nonstop on it

 

- Began to titrate off propranolol and fludrocortisone at same time

 

- Made giant reduction to fludrocortisone in August 2017. Ended up in ER. Severe suffering. MRI showed colitis, liver abnormality, blood test showed abnormal thyroid, anemia. Nurse put morphine into my IV, had adverse reaction. Felt like my body was seizing, couldn't speak. Nurse told me to "calm down" and walked away

 

- Went home. Decided never to see doctors again. Would rather die than go to ER. Could not speak normally. Could not leave my bed. Had to be wheeled in wheelchair to bathroom. Mom and sister had to bathe me in bed. I was 24. Could only eat juiced asparagus, apple sauce.

 

- Had to take high doses of benadryl daily to control the extreme immune reactivation from the fludro reduction

 

- Managed to regain some mobility with time. Went to natural doc. She told me to stop zofran, antihistamines, birth control, bunch of other stuff cold turkey. Did, because I rightfully realized the meds were killing me and was desperate to get off them, but I really never learn

 

- Natural doc showed me the over a dozen different meds I was on had 24 interactions and it was amazing I wasn't dead

 

- October 2017, blood work showed liver and kidney damage, immune system dysfunction, blood cell issues

 

- As of currently, I am only still on nexium, fludrocortisone (though I'm almost halfway off the PM dose), and corlanor. Managed to stop everything else in course of one year through sheer willpower. Now worse than ever

 

- Am taking break from reductions to try to fix myself. Have literally only been able to eat salmon, buckwheat, and cooked squash and carrot for over a year and a half. Am likely severely nutritionally deficient but cannot eat without suffering I can't begin to describe. 6'0, weigh 130 lbs despite cushing-like fat distribution due to fludro dose

 

- Severe neurological, immunological, gastroenterological problems. Can't describe. Impossible to think, feels like part of my brain is missing. Have a hard time reading. Constantly depressed, constantly wired, constant "lightning" and wanting to rip out of my body still. Muscle tenseness, contractions, eye, hand, mouth/tongue tics, difficulty breathing. Can take walks outside but only short distances. Now have two different size pupils. Cannot fight off common colds. Cry from pain daily. The physical feeling of akathisia is worse than pain. Memory and cognitive difficulties, constant looping thoughts, constant intrusive sounds, images, thoughts. I have no control over my thoughts anymore

 

I don't know if I remembered everything but it's the best I can explain. 

[fishinghat]

:Natural doc showed me the over a dozen different meds I was on had 24 interactions and it was amazing I wasn't dead"

That about sums it up. It takes around 2 or even 3 years for the body to recover from coming of most meds. It may be as long as January of 2023 before you get all the benefits of coming off these meds. Of course there is the risk of any original symptoms coming back but they have truly screwed up your body chemistry.

I want to look at something and will be back shortly.

[fishinghat]

I looked at the medical research on "reglan, a drug with black box warning for permanent akathisia and dyskinesia". There is a tremendous amount of documentation on this scenario. Most were successfully treated with the diphenhydramine you mentioned and recovery can take a year or longer BUT that is without the other drug manipulations you mentioned.

Just my laypersons opinion but I wouldn't worry about doing anymore drug changes until some of these symptoms abate. IF you felt you HAD to do something I would suggest you consider something like a benzo. Benzos act like gaba to block synapses which quiet nearly all nerve synapses. They are addictive but once things resolve you can slowly come off of them with little to no withdrawal symptoms.

I am so sorry that you had such incompetent medical drs. Unluckily this is not a new story for this site. many have experienced this type of history. Hang in there. Things should get better.

[Hel]

Thanks for the suggestions and encouragement, fishinghat. I definitely wouldn't recommend a benzo to anyone in my situation though. To update: things have continued to worsen since my last post.