Dr Refused To Renew Paxil

[ByteMe58]

During my initial hospital stay, a doctor in Smithtown NY admitted me for 22 days of tests before confirming POTS on a tilt table test with a heart rate of 180 bpm and a phone call to Dr. Grubb. He started me on all the meds including Paxil 20mg a day. Unfortunately he doesn't accept my health insurance so after first office visit he tells me to switch to his partner. His partner doesn't believe I have POTS, he thinks it is psychological and has me return to the hospital for another tilt test where he tortures me for 20 minutes of **** at 170 bpm, sweating, shaking, feet burning from blood pooling, you know - the works. Then he refuses to sign my disability paperwork because I must have anxiety problems, my wife pleads with him to call Dr. Grubb to confirm my case.

He has his nurse call me an hour later apologizing for misdiagnosing me after speaking with Dr. Grubb, apparently this doctor I switched to didn't know what POTS is, and they sign my disability paperwork and send it right in.

Now 2 weeks later the Paxil prescription is running out, so I call their office and they get back to me in a day or two and say you don't need that and they don't renew it. Now what kind of doctor has you stop paxil cold turkey after 5 months of 20mg a day? Ever heard of withdrawals doc?

Over the next 4 days, I ended up with nightmares, night sweats, crawling on the floor screaming for my wife to help me to bed, extreme vertigo when moving my eyes to the side, headaches, and I swear I've heard voices at night, and the feeling that I'm getting worse and can't go through this again. I'm not saying suicidal, but no will to go on like this.

The Moral here: Don't trust a guy just because he's wearing a white jacket with a pencil in the top pocket.

Frank

[Guest tearose]

This is unacceptable! You have to gather your energy and do a few things!!!

Call the hospital administrator and report the doctor.

Get to someone you trust and get the medication tapered off if that is what you need.

If you want to, you can call back the hospital and have the administrator find a doctor to take over your case.

YOU MUST be your own advocate!!! I do know how hard it is when we are having more symptoms but you must hang in there and persevere. You only have this one body and one life and you are loved and appreciated. Don't let the foolish lack of knowledge of a doctor invalidate what you know is a rare disorder!!! Don't go there!

Can you get to another doctor who can help you?

PLEASE, if you meditate or pray, do this too. I will keep you in my prayers.

Now get busy and make those phone calls.

tearose

[lieze]

This is exactly why I am afraid to start the Paxil.

I read about the awful withdraw symptoms on the internet.

It seems the pharmaceutical company that created it knew about this but maybe tried to hide it?

When my general practitioner wrote me the script she warned me I might have to be on it for life.

I thought I was willing to try it but could never work up my nerve after I read it could cause orthostatic hypotension and I already start to get the tunnel vision, go black at times when I would stand and start to walk so I definitely did not want to start anything that would possibly make that worse especially when I got a heightened orthostatic response after trying buspar that sent me to ER.

I guess if it is working for you I would want to continue it.

I would suggest you try just walking into ER explain the situation and see if they can't just renew your script for 30 days and then try to find a doctor that will renew it for you.

Might also try I have a nurse therapist that works under a doctor who is able to prescribe meds.

You might try that route, someone you can talk to about your feelings that is licensed to order meds. Chances are they are going to want to keep you stable and be happy to fill your script for you. Mine only is frustrated because she says I am the most anxious patient she has and I refuse to take anything she wants to give, so ours is the opposite problem. I would encourage you to see her but she is in Ohio, too far probably to travel, but she's a very compassionate person.

Maybe you can find someone similar in your area.

lieze

[potsgirl]

Hola Frank~

I've been on Paxil, 15 mg, for about 8 years now, and I've found it really has helped me with some general anxiety. Do you feel that it was helping you? If so, I would definitely call Dr. Grubb immediately and tell his assistant/him what's going on. I would bet he'd be willing to write you a new prescription today, and to refer you to another doctor ASAP. I second Tearose's thoughts, too, although it's pretty unlikely that one doctor will override another, but Dr. Grubb should be willing to do so - stopping Paxil suddenly is downright dangerous. If Dr. Grubb doesn't work, head to the ER. They should know how dangerous it is, and possibly give you enough Paxil until you get a new prescription.

Are you seeing a psychiatrist? I see one every 2-3 months, and he's the one that writes me my prescription for Paxil and Klonopin to help me sleep. Maybe this would help resolve the issue?

Wishing you well & let us know what happens,

Jana

[flop]

I'm so sorry to hear about what you have been put through. I know some doctors are now saying that SSRIs like Paxil (Paroxetine) are not good for people with POTS. I have been on Paroxetine, prescribed by my cardiologist for my POTS, for several years. When I saw a different consultant neurologist in London in November he told me that POTSwise I should get off the paroxetine. He didn't actually get me to start weaning off because I cried during the consult and he worried that I was depressed.

A year ago I had a horrible experience when the pharmacy forgot to dispense my paroxetine and I missed 6 doses without realising. It was when I started hallucinating and became almost suicidal that I thought to myself "I wonder if this could be a side-effect of paroxetine?". I went to my med bag to get the information leaflet out - whoa, no paroxetine! When I reported this to the pharmacy they said it was a serious error and reported it to the department of health.

No-one should ever attempt to suddenly stop taking paroxetine. It is perfectly possible to stop it safely if the dose is tappered very slowly (using liquid medication is best as you can make much smaller decremental steps). You need to get an emergency supply of paroxetine now to halt the withdrawal that you are experiencing. I would contact your PCP or the doctor who stopped the script. If you explain the situation they should give you enough pills to cover until you can have a proper consult and decide if you want to be on the med or not. If you have no luck with the doctors then you should go to the ER, feeling as bad as you do right now is an emergency and it can be easily treated.

Hope you get some help and feel better soon,

Flop

[Notgivinup]

Absolutely unacceptable. No one should ever have to stop meds. cold turkey. Everyone here has great suggestions. I'm starting to really feel jaded by doctors these days.

Sorry for what you're going thru.

[juliegee]

I'm so sorry, Frank. I was not aware of this new info that Flop spoke about. I was under the impression that antidepressants helped with vasoconstriction and helped to normalize the autonomic nervous system. My son takes 20mg of Lexapro for his dysautonomia (not depression/anxirty). I had read that seizures could result from stopping cold turkey.

How are you feeling NOW? OK without the Paxil (now that you're past the acute phase of withdrawal)? If you think you felt better with the Paxil, I would have no qualm about re-starting it (titrating up to a therapeutic dose) as long as you have a supportive doc backing you, who will take the time to learn about dysautonomia, and who will keep the Paxil coming.

THAT doc needs to know what he did to you. Keep us posted on what you decide to do.

Julie

[flop]

Hi Julie,

I haven't actually seen any evidence that SSRIs are bad for POTS it is just that is what the autonomic doctor (collegue of Prof Mathis) told me in clinic. He actually advised me to stop taking: paroxetine; codeine; paracetamol; fexofenadine (allegra); ranitidine; montelukast (singulair); salbutamol and my epi-pen. He said that they would all make my POTS worse. I explained that untreated allergies made my POTS ten times worse than it is now and that being in pain also causes a POTS flare.

Flop

[lieze]

I'm thinking Paxil is a vasodilator rather than a vasoconstrictor does anybody know if I'm wrong about this?

Either way if it helps I wouldn't want to discontinue it either.

[lalalisa]

Wow, I am SO sorry to hear about your experience. The previous posts are correct - this should not happen and I hope you were able to find someone to prescribe more Paxil for you.

I am currently on the lowest dose of the extended release Paxil. (Paxil CR 12.5) Whenever I've gone off of it I've cut it into pieces and SLOWLY titrated off over the course of a couple of months. I can't even imagine what your body is going through!

Please let us know how you're doing,

Blessings,

Lisa

[firewatcher]

Have you spoken with your Pharmacist? He can't prescribe, but he can call the doctor's office and request a refill and tell the nurse that this is not a medication that you can stop cold-turkey. One medical professional to another usually carries more weight than the patient calling, asking for drugs. Your family doc can also prescribe it for you and give you a taper schedule. My family doc did that for me and Klonopin before I went to Vanderbilt for testing. Just a thought.

[potsgirl]

Excellent suggestions, Firewatcher!

[ByteMe58]

Thank you all for your concern, information and advice.

I actually called Dr. Grubb's office in Ohio and told them I am done with this NY doctor. When I explained how he refused to refill the prescription for Paxil because he didn't think I needed it anymore, I was told not only would they refill it for me, but I did still need it and would for a long time. They were so nice there, they called my pharmacy directly.

I have to find a new local doctor on Long Island who knows a little about autonomic dysfunction, POTS and orthostatic hypertension. This old doctor should be selling french fries somewhere.

I should be back to normal soon, but I'll probably miss the voices at night. Some of those guys were pretty funny.

Thanks,

Frank

[juliegee]

Hi Julie,

I haven't actually seen any evidence that SSRIs are bad for POTS it is just that is what the autonomic doctor (collegue of Prof Mathis) told me in clinic. He actually advised me to stop taking: paroxetine; codeine; paracetamol; fexofenadine (allegra); ranitidine; montelukast (singulair); salbutamol and my epi-pen. He said that they would all make my POTS worse. I explained that untreated allergies made my POTS ten times worse than it is now and that being in pain also causes a POTS flare.

Flop

Flop,

That's awful. I know Prof Mathis is extremely knowledgeable, but this collegue of his gave very questionable advice. I'm actually beginning to remember your nightmare appointment...

Without my H-1's, H-2, singulair, and epi-pen my dysautonomia would have killed me by now- seriously. And, I KNOW that SSRI's are very helpful to many with autonomic dysfunction- including my son. I totally agree with you re. pain control and syautonomia. When pain gets ahead of me/my meds- I shake uncontrollably and fall asleep.

I hope you didn't heed his advice and will get to see Prof Mathis himself soon if you haven't already.

Hugs-

Julie

[juliegee]

I'm thinking Paxil is a vasodilator rather than a vasoconstrictor does anybody know if I'm wrong about this?

Either way if it helps I wouldn't want to discontinue it either.

Hi lieze-

Paxil and all SSRI's are basically synthetic serotonin. Serotonin is a powerful vasoconstrictor that works on the central nervous system. Without it, my son's feet and hands are ALWAYS deep purple. With the vasoconstrictive effects of lexapro (in his case), the blood is pumped back to his heart more effectively. His lightheadedness is improved, and his hands and feet appear a more normal color.

I agree with you. If it helps, keep using it!

Take Care-

Julie

[lieze]

Thanks for that information Julie.

So are we just using up all our serotonin then with the POTS?

I have noticeable depression since developing the POTS and sometimes notice that it accompanies days of symptoms, I'll feel the mood drop first and then the next couple days be more symptomatic. This has me curious. Other times I feel pretty upbeat and symptom free for the most part. Also just notice the uncontrollable urge to cry-especially if I am in a full blown episode like my episode in Walmart where I had to just sit on the floor because I just felt so floaty? I was like Lucy in one of those episodes where she just opens her mouth and bawls-totally out of control. But I just got ahold of myself and decided not to cry but the strong urge was there.

So glad you got your meds byteme what a nightmare that must have been.

lieze

[potsgirl]

Frank,

I'm so glad that you worked your situation out and don't need to keep suffering any longer. I know Paxil did a lot for me, so here's hoping it keeps you feeling better, too.

Take care~

Jana

[juliegee]

Thanks for that information Julie.

So are we just using up all our serotonin then with the POTS?

I have noticeable depression since developing the POTS and sometimes notice that it accompanies days of symptoms, I'll feel the mood drop first and then the next couple days be more symptomatic. This has me curious. Other times I feel pretty upbeat and symptom free for the most part. Also just notice the uncontrollable urge to cry-especially if I am in a full blown episode like my episode in Walmart where I had to just sit on the floor because I just felt so floaty? I was like Lucy in one of those episodes where she just opens her mouth and bawls-totally out of control. But I just got ahold of myself and decided not to cry but the strong urge was there.

So glad you got your meds byteme what a nightmare that must have been.

lieze

Hi lieze-

That sounds awful. I've had horrible experiences at Wal-Mart too, mostly when my BP was way too low. That store is too big when we aren't at our best. I once lost my FULL cart 6 times and kept having to start over. I prayed that security wasn't monitoring me . So embarrassing!

As far as serotonin levels and autonomic issues. There's definitely a connection. My son's docs surmised his levels were almost non-existent when he began his SSRI . He had a violent reaction to it initially- even at a really low dose. He started with Paxil. Within 10 mins to 30 mins of taking it, he would almost pass out, have to lie in a dark room, start to vomit, had a severe headache, etc. His docs pushed him to stick with it as they thought it was "shocking" his whole system because it was so low. He did- at very low doses. I gave it to him at night so he could just go to sleep with those horrible symptoms- he sure couldn't do anything else. They were right. Within a few weeks, he was able to increase his dose. He slowly lost the negative side effects, and got to a much higher level of functioning. This was added to a high dose of florinef & salt.

WHY was he so low in serotonin? Where does it go? Did his body not manufacture it naturally? We have no idea. But, I do know that many, many patients with autonomic dysfunction improve with it. AND, I've seen many, many here with symptoms of anxiety and depression that they did NOT have before their illness. Being ill itself can certainly cause depression....but so can a shortage of serotonin.

My son's doc explained that the anxiety that can accompany dysautonomia is a physiological response to the body's anticipation of a drop in BP. My son would feel anxious about 30 mins before he fainted. His BP would be fine, but he'd be all lightheaded, nauseous, and anxious. THAT was our signal that his BP was about to drop.

Dysautonomia precedes depression and anxiety. SSRI's help. My son's doc at Hopkins has been so wonderful and careful to explain to my son that any of the above is NOT an emotional weakness, but rather a physiological response to the abnormalities in his autonomic nervous system.

Sorry to ramble and hijack Frank's thread. Forgive me....Frank, you have the BEST attitude. After all you've been through to be able to joke about the "voices." You almost make me miss them too I hope you transition back the the Paxil easier than you got off of it.

Julie

[lieze]

Thanks so much for that information Julie.

It helps explain why Dr. Grubb stated Frank will be needing to take the Paxil for quite some time.

lieze

[Chaos]

Thanks for the good info Juli. You're always a veritable fount of information!

This makes my episodes of depression make so much more sense. They have always felt more chemical to me than "emotional" if that makes any sense. Even my therapist has said many times "this is just chemical, you need to get back on your meds". I've always felt kind of guilty for having major depressive episodes because there never seems to "be a reason to be depressed". But when I look back, they've always followed a surgery or some other trigger that has set off a lot of POTS symptoms- back before I knew what they were.

Frank, Glad to see you got your meds back. That doc should be subjected to some major pain and suffering at some point in his life. He reminds me of a bully that would kick the crutches out from under someone with a broken leg. He needs to have his white coat revoked! Thank God for doctors who understand what it really means to BE a doctor!